Click for next page ( 124


The National Academies | 500 Fifth St. N.W. | Washington, D.C. 20001
Copyright © National Academy of Sciences. All rights reserved.
Terms of Use and Privacy Statement



Below are the first 10 and last 10 pages of uncorrected machine-read text (when available) of this chapter, followed by the top 30 algorithmically extracted key phrases from the chapter as a whole.
Intended to provide our own search engines and external engines with highly rich, chapter-representative searchable text on the opening pages of each chapter. Because it is UNCORRECTED material, please consider the following text as a useful but insufficient proxy for the authoritative book pages.

Do not use for reproduction, copying, pasting, or reading; exclusively for search engines.

OCR for page 123
Appendix A Data Collection Approaches COHORT STUDIES Atherosclerosis Risk in Communities (ARIC) Main Purpose of Study: The main purpose of the community surveillance component of the ARIC Study is to continuously monitor and independently validate coronary heart disease (CHD) events (acute myocardial infarction [MI] and death due to coronary heart disease) and acute decompensated heart failure occurring among residents of four geographically defined communities in the United States in order to evaluate trends in mortality, incidence, case fatality rates, and medical care by age, gender, race, community, and time. The ARIC Study also includes monitoring and validating events among cohort participants (random sample of 15,792 men and women from four communities enrolled in 1987–1989). In addition to the CHD endpoints above, clinically recognized strokes among cohort participants are also identified and validated through surveillance procedures. All hospitalizations among the cohort are identified and recorded, but only those mentioned above are independently validated. Investigations using endpoints captured in cohort surveillance has led to over 800 published reports regarding the prevalence of cardiovascular disease and risk factors among the cohort as well as the role of established and novel risk factors in predicting disease. The information relates to the ARIC Study’s community surveillance component unless noted otherwise. Sample: ARIC community surveillance is a continuous retrospective, hospital-based surveillance study. Popula- tion denominators are estimated using interpolation and extrapolation for 1990 and 2000 U.S. Census population estimates. Through community surveillance, the ARIC Study enumerates and validates cases (events) of hospitalized MI and CHD deaths occurring after January 1, 1987, in 35- through-74-year-old male and female residents of the four ARIC Study communities: Forsyth County, North Carolina; Jackson, Mississippi; suburbs of Minneapolis, Minnesota; and Washington County, Maryland. The population of men and women age 35–74 in these four communities was approximately 406,000 in 2007. The eligible age range of ARIC surveillance was expanded to age 84 beginning in 2005, bringing the surveillance population to a total of approximately 447,000 men and women age 35–84. Community surveillance was also expanded to include surveillance of hospitalized heart failure beginning in 2005 for community residents age 55 years and older. The ARIC Study is currently funded to conduct surveil - 123

OCR for page 123
124 A NATIONWIDE FRAMEWORK FOR SURVEILLANCE OF CARDIOVASCULAR AND CHRONIC LUNG DISEASES lance for events occurring through December 31, 2010. A renewal is pending that will extend surveillance through December 31, 2014. All residents of the four geographically defined communities are included in ARIC community surveillance regardless of race or ethnicity. The white minority in Jackson and the black minority in Forsyth County are over- sampled. The number of persons reported to be neither black nor white has been small in these communities and currently produce unstable event rates. Both men and women of all race or ethnic groups are eligible for selection in ARIC community surveillance. Frequency of Collection and Sources of Data: ARIC community surveillance identifies, samples, and inves- tigates hospitalizations on a continuous basis and produces annual event rates in the four communities. Sources include hospitalized events for acute myocardial infarction are identified from electronic lists of discharges obtained for catchment area hospitals on an ongoing basis. Hospitalizations selected (sampled) for investigation are identified and medical records for those events are obtained by trained ARIC medical record abstractors. Medical records are abstracted using a standardized, web-based data entry system. Fatal events for investigation are identified through electronic lists of deaths obtained from local or state health departments. Deaths are sampled based on underlying cause of death codes. Sampled death certificates are obtained and abstracted by trained ARIC staff. Death with an underlying cause of death code that is related to CHD and occurring out-of-hospital are targeted for further investigation through telephone interview with next of kin or witness. The decedent’s physician is also identified from the death certificate and sent a questionnaire requesting information relevant to classification of the death. If a coroner or medical examiner, information is also obtained if appropriate. For ARIC cohort participants, hospitalizations for investigation are identified through an annual follow-up telephone interview conducted by ARIC staff. In addition to the events noted above, stroke related hos - pitalizations are also indentified among cohort members. Any hospitalization reported by a cohort member through annual follow-up telephone interviews or found through routine community surveillance is identified and obtained for abstraction. Deaths among cohort members are identified either through annual follow-up contact, monitoring of electronic death files from local and state health departments, or by on-going monitoring of obituaries in the study communities by ARIC staff. Mode of Data Collection: Data on hospitalizations and deaths are collected manually through detailed abstrac - tion of medical record or death records. Data from next of kin for out-of-hospital deaths are collected through a telephone interview. Mailed surveys are also used to solicit information from physicians identified on death certificates for selected cases. Specific Questions Related to CVD, COPD, Asthma, and/or Diabetes: In ARIC community surveillance, information collected on sampled hospitalized myocardial infarction and heart failure events include specific items on medical history and comorbid conditions such as chronic pulmonary disease and diabetes. Furthermore, all discharge codes for sampled cases are also recorded. However, hospitalizations for chronic pulmonary disease, asthma, and/or diabetes are not specifically investigated in ARIC community surveillance. Among ARIC cohort participants, all hospitalizations for any reason are indentified and ICD-9-CM discharge diagnoses and procedure codes recorded. Those related to myocardial infarction, heart failure, and stroke are inves - tigated further as noted above. During the annual follow-up interview of cohort participants, questions are asked that relate to pulmonary signs and symptoms as well as self-reported physician diagnosis of diabetes. Information Obtained: Measures available through ARIC community surveillance are summarized as follows: • Incidence: Annual incidence rates of hospitalized acute myocardial infarction (1987–2014) • Annual incidence rates of hospitalized acute decompensated heart failure (2005–2014) • Annual mortality rates due to coronary heart disease (1987–2014) • Annual mortality due to sudden cardiac death (1987–2014) • Case fatality: Annual case fatality rates (through one year) after hospitalized acute MI (1987–2014) • Clinical care information: Procedures during hospital stay for hospitalized acute MI (* includes data on time since event onset): Cardiac catheterization, coronary angiography, coronary angioplasty,* coronary atherectomy,* Swan-Ganz catheterization, echocardiography, coronary bypass surgery,* intracoronary thrombolytic therapy,* intravenous thrombolytic therapy,* aortic balloon pump, MRI scan of heart, exercise

OCR for page 123
125 APPENDIX A stress test, Holter monitoring, coronary stent placement,* implanted defibrillator,* coronary CT, closed chest massage or cardioversion, and other procedures recorded as open text • Procedures during hospital stay for hospitalized acute decompensated heart failure: Chest X-ray, echo- cardiography, coronary angiography, cardiac radionuclide ventriculogram, magnetic resonance imaging, cardiac CT, stress tests • Medical therapy during hospital stay or discharge for hospitalized acute MI: Nitrates, calcium channel blockers, beta-blockers, digitalis, lidocaine, Coumadin, aspirin, ACE or angiotensin II inhibitors, heparin infusion, antiplatelet agents, lipid lowering medication • Medical therapy during hospital stay or discharge for hospitalized acute decompensated heart failure: CE inhibitors, angiotensin II receptor blockers, beta blockers, digitalis, diuretics, aldosterone blocker, lipid lowering agents, nitrates, hydralzaine, IV inotropes • Diagnostic information for hospitalized acute MI: Biomarkers (total CK, CK-MB, total LDH, troponin I, tropoinin T, BNP, Pro-BNP, serum creatinine) • Electrocardiographic information: Copies of up to three electrocardiograms with Minnesota coding for each • Diagnostic information for hospitalized acute decompensated heart failure: Diagnostic findings including measures of ejection fraction from imaging, biomarkers including BNP, proBNP, troponin I, troponin T, serum creatinine, BUN Information Not Obtained: Measures available through ARIC community surveillance are summarized as follows: • Prevalence: ARIC community surveillance designed to capture incident and recurrent hospitalized MI and heart failure. Prevalence measures of these conditions in the population are not obtained. • Functional Health Outcomes: Not captured in ARIC community surveillance • Risk Factor (including stressor): Not captured in ARIC community surveillance Demographic Characteristics Collected: Age, sex, race or ethnic group, Hispanic or Latino origin, type of health insurance, patient address (geocoded to provide latitude and longitude and linked to census data on neigh - borhood socioeconomic status). Who Pays for Data Collection?: ARIC surveillance is funded by a contract with the National Institutes of Health, National Health, Lung, and Blood Institute. Dissemination of Data: Public use data files are created and updated annually and are available through the NHLBI project office. The Cardiovascular Health Study (CHS) Main Purpose of Study: The Cardiovascular Health Study is an NHLBI-funded observational study of risk factors for cardiovascular disease and stroke in adults 65 years or older. Sample: In June 1990, four field centers completed the recruitment of 5,201 participants. Between November 1992 and June 1993, an additional 687 African Americans were recruited using similar methods. The sample was drawn from four field centers. They are located in Forsyth County, North Carolina; Sacramento County, California; Washington County, Maryland; and Pittsburgh, Pennsylvania. The only geographical level of collection of data was by field center. Minorities are oversampled. Men and women are included. A stipulation of the study was that participants be over 65 or older. Frequency of Collection and Sources of Data: Until 1999, semiannual contacts alternated between clinic examinations and telephone contacts, during which information about hospitalizations and potential cardiovascular events was collected. Since 1999, participants have been contacted twice a year by telephone to collect limited data, including medication data, and to identify all hospitalizations and potential cardiovascular events. Participants were also invited to participate in a clinic or home visit as part of an ancillary study called CHS All Stars Study in year 18; semiannual phone calls continue. Presently collecting data for year 21. The CHS All Stars Study is an ancil - lary study that focuses on reexamining the long-term survivors of CHS to determine the likelihood of maintaining

OCR for page 123
126 A NATIONWIDE FRAMEWORK FOR SURVEILLANCE OF CARDIOVASCULAR AND CHRONIC LUNG DISEASES function later in life. The primary source of data is participant examinations and interviews. Hospital records were obtained to confirm self-reported events, and CMS (Medicare) records were searched to capture any missed events. Mode of Data Collection: The baseline examination consisted of a home interview and a clinic examination that assessed not only traditional risk factors for cardiovascular disease but also measures of subclinical disease, including carotid ultrasound, echocardiography, electrocardiography, MRIs, and pulmonary function. Major exam components were repeated during annual follow-up examinations through 1999. Cranial MRI scans, retinal photography, and tests of endothelial function were added as new components. Specific Questions Related to CVD, COPD, Asthma, and/or Diabetes: Cardiovascular disease was measured and adjudicated by a panel of doctors based on hospital records. Chronic pulmonary disease was measured by self- report and periodic spirometry measurement. Asthma was measured through self-report. Diabetes was measured through self-report, periodic measurement of blood glucose level, and annual review of medications. Information Obtained: Incidence, prevalence, functional health outcomes, risk factors, clinical care informa - tion, demographic characteristics. Who Pays for Data Collection?: CHS was originally funded through a contract from the National Heart, Lung, and Blood Institute (NHLBI). Additional funding has been obtained through a renewal of the NHLBI grant to continue cohort follow-up, from NINDS, the NIA, and a wide number of ancillary studies. Dissemination of Data: There are two means of obtaining data: (1) Researchers can contact the Collabora - tive Health Studies Coordinating Center to be sponsored by a CHS investigator. They would then submit a paper proposal to be reviewed by the CHS Publications and Presentations Committee and the Steering Committee. Pro - posed papers would be reviewed for consistency with the goals of CHS, lack of overlap with other work, scientific integrity, and evidence of collaborative authorship, including junior investigators. (2) Data are also available as a limited access data set with NHLBI. Applicants can make a direct enquiry to NHLBI to obtain that data. Additional Comments: Pittsburgh population entirely urban; other three field centers recruited mixed urban and rural populations; participating academic institutions include the University of Washington, the University of California–Davis, the Johns Hopkins University, Wake Forest University School of Medicine, University of Pittsburgh, University of Vermont, University of Maryland, Baltimore, University of Arizona, University of Wisconsin, and Tufts New England Medical Center; standard protocols for the identification and adjudication of cardiovascular events were implemented during follow-up. The adjudicated events are CHD, angina, heart failure (HF), stroke, transient ischemic attack (TIA), claudication, and mortality. Other patient information was collected through a wide array of measures. COPDGene® Study Main Purpose of Study: Scientific researchers are conducting an investigation to find the genes that cause a susceptibility to developing COPD. This groundbreaking study, a $37 million grant awarded by the National Heart, Lung, and Blood Institute, has the potential of changing what is known about COPD and COPD treatment. Dr. James Crapo of the National Jewish Health in Denver, Colorado, along with Dr. Edwin Silverman of the Brigham and Women’s Hospital in Boston, Massachusetts, are conducting a genetic epidemiology study of COPD—a study to characterize COPD in the U.S. population and to find the genes that create a risk for developing this disease. The study brings together a large cohort of individuals who have COPD or are at risk for developing COPD. The study will analyze genetic variations across the entire human genome to identify the primary genes that determine why some individuals are more susceptible to developing COPD than other individuals. The COPD Foundation Registry serves as a valuable supplemental source of patients for the COPDGene ® Study cohort. The COPDGene® Study has a highly characterized cohort of patients, including African Americans. The COPDGene® Study is in the process of creating the largest, well-characterized set of COPD and control subjects ever assembled for pulmonary disease research. In addition to identifying COPD susceptibility genetic determinants, important advances in characterization of the natural history of COPD and its phenotypes can be anticipated, along with identification of new, well-characterized COPD subtypes. Improved understanding of COPD subtypes and genes controlling susceptibility to COPD could lead to novel pathophysiological insights, refined diagnostic criteria, and new approaches for pharmacological treatments for COPD.

OCR for page 123
127 APPENDIX A An interesting aspect of the COPDGene® Study is that participating patients have agreed to be contacted for other studies. So in essence, this study acts as a cohort of patients who are ready to participate in other studies. Thus, the COPDGene® Study cohort is also a registry for participation in other studies. The COPDGene® Study includes the following: Creation of a large cohort of subjects at risk for or express - ing one of the various stages of COPD (GOLD grades 1–4). This cohort will be clinically phenotyped and all subjects will undergo HRCT, which will be quantitatively analyzed to divide the cohort into unique subtypes of COPD. A genome-wide association study is being conducted on the cohort resulting in fine mapping of the genetic determinants for susceptibility to develop COPD. The impact of these identified COPD susceptibility genes on each of the CT-defined COPD subtypes will be determined. The cohort of patients is being followed longitudi - nally to identify the clinical phenotypes, CT subtypes, and genotypes that determine risk for COPD progression, morbidity, and mortality. While the initial emphasis in the design of the cohort was on COPD, all subjects in the cohort will be smokers, and the cohort analysis will be expanded to include other smoking-related diseases such as cardiovascular disease and cancer. Finally, the ultimate goal of this project is to carry out translational studies to validate new therapies that are personalized for subjects with specific subtypes of COPD. The study, which was originally scheduled to be completed in 5 years, has surpassed enrollment projections and will be concluding enrollment in the next month, 1 year ahead of schedule. In order to identify the genetic basis of COPD, a study group of 10,000 individuals will be formed. Nineteen medical centers across the U.S. host the clinical evaluations of eligible individuals that want to participate in the study. The clinical evaluations are being conducted physiologically and radiographically, meaning that the individual takes a spirometry test, tests on a 6-minute walk, and scores on a BODE scale (body mass index, degree of airflow obstruction, degree of dyspnea, and exercise capacity). The individual is also given a chest CT scan, completes a set of questionnaires, and donates about 30cc (6 teaspoons) of blood for genetic analysis. The aims of the COPDGene® Study are as follows: • Specific Aim 1: Build Cohort of 10,000 Smokers (10+ pack years). Clinically phenotype COPD cases and control subjects for genetic, epidemiologic, natural history, and pharmacologic intervention studies. — Sample Size by GOLD Criteria ♦ Non-Smokers without COPD (100 subjects) ♦ Smokers without COPD (4,000 subjects) ♦ Smokers with possible COPD, GOLD grade 1 (800 subjects) ♦ Smokers with possible COPD, GOLD grade U (1,100 subjects) ♦ Smokers with COPD, GOLD grades 2–4 (4,000 subjects) — Sample Size by Race ♦ COPD case/control cohort—Non-Hispanic white (n = 6,700 total) ♦ COPD case/control cohort—African American (n = 3,300 total) • Specific Aim 2: CT Phenotype Cohort—Characterization of Subtypes of COPD. — Use HRCT (inspiration and expiration scans) to subdivide the cohort into groups expressing unique airway disease (inflammation) and lung parenchymal subtypes (emphysema) of COPD. — Validate quantitative indexes (by HRCT) of the emphysema and airway inflammatory disease subtypes. ♦ Percent of specific lung regions with low attenuation ♦ Airway wall thickness of 3rd–6th generation airways ♦ Percent gas trapping identified by expiratory CT scan • Specific Aim 3: Genotype Cohort. Genome-wide association study using a phased approach. — A genome-wide panel of SNPs will be tested for association with COPD. — Confirmation of SNPs to identify genomic regions for intensive investigation. — Mapping of 50 genomic regions to identify susceptibility genes for COPD. — Fine mapping of candidate genes to identify susceptibility alleles and/or high risk haplo types. — Assess the association of genetic variants in the identified COPD susceptibility genes with CT-defined COPD subtypes.

OCR for page 123
128 A NATIONWIDE FRAMEWORK FOR SURVEILLANCE OF CARDIOVASCULAR AND CHRONIC LUNG DISEASES • Specific Aim 4: Longitudinal Follow-up of This Cohort to — Assess risk factors for COPD progression, morbidity, and mortality — Determine which CT phenotypes and genotypes identify asymptomatic subjects who are at high risk for progression to overt COPD — Develop biomarkers for COPD and COPD subtypes that relate to disease progression and prevention • Specific Aim 5: Expand Analysis of Cohort to Evaluate Other Smoking-Related Diseases and/or Comorbidities. — Cardiovascular disease — Stroke — Cancer — Musculoskeletal disease — Depression/cognitive dysfunction • Specific Aim 6: Use Phenotyped and Genotyped Subcomponents of Cohort for Translational Studies to Validate New Therapies. — Pharmacologic interventions in specific subtypes of COPD — Identification of asymptomatic smokers at high risk for disease progression and development of preventive therapies — Use identified biomarkers that relate to disease progression and prevention to assess efficacy of new therapies Sample: The goal of the COPDGene® Study is to enroll 10,000 patients. The participating centers enrolling patients are located across the United States. Geographic levels included are state and national (United States only). Goal is to frequency match for gender distribution within each racial group for the case-control component of this project. Approximately 33% of the final study sample will be African American. Subjects must be at least 45 years old, and both men and women may participate. Frequency of Data Collection and Sources of Data: Data are collected at the initial study visit, and longitudinal data are collected at 6-month intervals following the visit. Sources of data include questionnaires collected at the visit, blood and CT scan analysis, longitudinal follow-up questionnaires, and subject medical records if available. Mode of Data Collection: In-person examination or biomarker data collection, administrative data, mailed surveys, and automated telephony surveys Specific Questions Related to CVD, COPD, Asthma, and/or Diabetes: Questions are asked related to comor- bidities that include CVD, chronic pulmonary disease, asthma, and diabetes. Information Obtained: Incidence, prevalence, functional health outcomes, and risk factors, including stressors, clinical care information, and demographic characteristics Cost of Survey/Registry: Almost 40 million dollars Who Pays for the Data Collection?: The National Institutes of Health (NIH) and the COPPD Foundation Dissemination of Data: Data files are available online to authorized study investigators either through the COPDGene® Study website or through the National Institutes of Health dbGaP resource. Authorized COPDGene ® investigators have access through the COPDGene® website. All other data users must access data through dbGaP. All data to be provided externally shall be de-identified. This study is novel and unique since it will allow trans - parent and public access the study’s data. Investigators, government, and industry shall have access to the data. The Coronary Artery Risk Development in Young Adults (CARDIA) Study Main Purpose of Study: The Coronary Artery Risk Development in Young Adults (CARDIA) Study is a study examining how heart disease develops in adults. Sample: 5,115 black and white men and women across four cities: Birmingham, Alabama; Chicago, Illi - nois; Minneapolis, Minnesota; and Oakland, California. The study was designed so that there are approximately 50% blacks, 50% whites; 50% males, 50% females; 50% aged 18 to 24, 50% aged 25–30; 50% who have not completed high school, and 50% who have completed high school. From the official sample size for the study n = 5,115: Birmingham, Alabama: 3,252 eligible participants contacted, 1,811 (55.7%) made appointments; of those 1,178 (65.0%) examined; Chicago, Illinois: 2,205 eli -

OCR for page 123
129 APPENDIX A gible participants contacted, 2,149 (97.5%) made appointments; of those 1,109 (51.6%) examined; Minneapolis, Minnesota: 2,473 eligible participants contacted, 1,777 (71.9%) made appointments, of those 1,402 (78.9%) exam - ined; Oakland, California: 2,203 eligible participants contacted; 2,047 (92.5%) made appointments; of those 1,426 (69.7%) examined. A majority of the initial group (1986) has participated in follow-up examinations: 1987–1988 (90%); 1990–1991 (86%); 1992–1993 (81%); 1995–1996 (79%); 2000–2001 (74%); 2005–2006 (72%) Frequency of Collection and Sources of Data: Study initiated in 1986 (Year 0), with the same participants asked to participate in follow-up examinations in 1987–1988 (Year 2); 1990–1991 (Year 5); 1992–1993 (Year 7); 1995–1996 (Year 10); 2000–2001 (Year 15); 2005–2006 (Year 20). Core study exam results; Medical history; Obesity questionnaires; Psychosocial; Physical measurement; Pulmonary function testing and questionnaire; Electrocardiogram; Echocardiography; Genetic studies Mode of Data Collection: In-person interview on medical and family history; medical exams; anthropometry; blood test Specific Questions Related to CVD, COPD, Asthma, and/or Diabetes: Core Study: blood pressure, lipids, lipoproteins, apoproteins, cotinine, SMAC 12, fasting insulin, fasting glucose, oral glucose tolerance test, CBC, Lp(a), fibrinogen, stored plasma, stored serum, serum creatinine, urinary creatinine, uric acid, c-reactive protein, albuminuria, interleukin-6; Pulmonary function; Electrocardiogram; Echocardiography, HbA1C Information Obtained: Incidence, prevalence, quality of life, discrimination, height, weight, skinfold fat, blood pressure, cholesterol, other lipids, other chemistries (insulin and glucose), physical activity/fitness, diet his - tory, food frequency, obesity questionnaire, personal history, substance use (tobacco and alcohol), behavioral and psychological variables, stress, anxiety. Subclinical atherosclerosis measured via echocardiography during Year 5 and 10, computed tomography during Year 15 and 20, carotid ultrasound during Year 20. Demographic information includes age, race/ethnicity, geographic region, education. Who Pays for Data Collection?: Group of contracts funded by the National Heart, Lung, and Blood Institute (NHLBI); brain MRI component is included in the Year 25 exam that NIA is funding. Dissemination of Data: CARDIA uses a distributed data system with current data. In this system the Field Center PIs, the Steering Committee Chair, and the Project Office (NHLBI) get a full copy of the data. Proposals for manuscripts are approved by the study’s Publications and Presentations Committee. All approved manuscripts require a CARDIA-approved investigator to be associated with the manuscript. Investigators with approved manu - scripts can request manuscript specific data sets from the Coordinating Center. Investigators can also request a data repository data set (formerly known as Limited Access Dataset) directly from NHLBI. These data, however, have a 5-year lag (soon to be changed to a 3-year lag) and have been winsorized to protect participant confidentiality. Eight Americas Purpose: The Eight Americas explore the causes of disparities in race-counties that inform specific public health intervention policies and programs. Sample: The sample includes the entire U.S. population (all ages) divided into eight distinct subgroups. Build - ing blocks for these groups were a combination of race and county of residence. Race-county units were combined based on socioeconomic and geographical indicators, including location of county of residence, population density, race-specific county-level per capita income, and cumulative homicide rate. Smaller counties were merged with adjacent counties to form units with total population of at least 10,000 males and 10,000 females. Merged county units also formed to account for changes in county status and county lines. There are 2,072 counties. Souces of Data: For 1982–1989, interpolated age-, sex-, race-, and county-specific population figures using 1980 and 1990 Census figures. Used bridged-race population estimates released by National Center for Health Statistics (NCHS). NCHS mortality statistics. Behavioral Risk Factor Surveillance System for health plan cover- age and health care utilization. Global Burden of Disease database for life expectancy and probabilities of death for international comparisons. Information Obtained: Race, race-specific county income, average income per capita, percent completing high school, sex, and age.

OCR for page 123
130 A NATIONWIDE FRAMEWORK FOR SURVEILLANCE OF CARDIOVASCULAR AND CHRONIC LUNG DISEASES Who Pays for Data Collection?: Centers for Disease Control and Prevention, the Association of Schools of Public Health, the National Institute on Aging. Framingham Heart Study Main Purpose of Study: The Framingham Heart Study is a prospective, longitudinal observation of three generations of living population for CVD endpoints and other common chronic diseases. Sample: Size at entry: 15,447 men and women in five cohorts residing in or near Framingham. Local level data only. Minorities were not oversampled. Response rate: 70–80% over the 60+ years of the study. Age groups included at entry: • Original Cohort: 29–62 years • Offspring Cohort: less than 10 to 70 years • Third Generation and New Offspring Spouses Cohort: 19 to 79 years • Omni Group 1 Cohort: 20 to 79 years • Omni Group 2 Cohort: 20 to 70+ years Frequency of Data Collection: Health history updates every 2 years, clinic exam every 2 to 6 years Sources of Data: Hospital discharge, medical records, population interviews, disease registries Mode of Data Collection: Interviews and measurements from in-person examinations and biomarker col - lection; health history updates by mailed questionnaire or telephone interview; follow-up medical records from health care providers. Specific Questions Related to CVD, COPD, Asthma, and/or Diabetes: Extensive (variables posted on SHARe website, http://www.ncbi.nlm.nih.gov/sites/entrez?db=gap) Information Obtained: Incidence, prevalence, functional health outcomes, and risk factors, including stressors, clinical care information Who Pays for Data Collection?: NHLBI Contract and NIH grants Dissemination of Data: Data request applications are available online. Data are available through research proposals submitted online and approved by relevant review committees. FHS variables are posted on the Fram - ingham Heart Study website, www.framinghamheartstudy.org. Queries may be sent to the FHS research commit - tee. Principal investigators with proposals approved by the review committees and with IRB approval and data distribution agreements can obtain access. Millennium Cohort Study Purpose: In the late 1990s, the U.S. Department of Defense and Congress identified the need for coordi - nated epidemiological research to determine how military occupational exposures, including deployment-related exposures, affect long-term health. The Institute of Medicine more specifically defined the importance of a large, prospective study for evaluating exposures and a broad spectrum of important health outcomes. The Millennium Cohort Study was designed, in collaboration with all military services and the Department of Veterans Affairs, to meet these research challenges. The objectives of the Millennium Cohort were (1) to evaluate chronic diagnosed health problems, including hypertension, diabetes, and heart disease, among military members, in relationship to exposures of military con - cern and (2) to evaluate long-term subjective health, including chronic multi-symptom illnesses, among military members, especially in relationship to exposures of military concern. Sample: Launched in the summer of 2001, the Millennium Cohort Study began enrolling a representative sample of U.S. military personnel, both active duty and Reserve and National Guard members, who agreed to participate in follow-up well past their time in service, for up to 21 years. There are more than 150,000 consent - ing Millennium Cohort Study members. Currently, participants that enrolled in the 2001 survey cycle, Panel 1, include over 77,000; participants that enrolled in the 2004 survey cycle, Panel 2, include an additional 31,100; and participants that enrolled in the 2007 survey cycle, Panel 3, include approximately 43,400 participants. The total cohort is over 152,000 members and will be adding approximately 60,000 U.S. military members, both active

OCR for page 123
131 APPENDIX A duty and Reserve and National Guard, as well as a Millennium Cohort Family Study component of approximately 10,000 spouses later this year. The cohort is based on a random sample of U.S. service members residing in all 50 states and territories; no selection or stratification is based on geographic location. Service members are often assigned and deployed to many geographic locations outside of the United States. Team members are working with professionals at Defense Manpower Data Center (DMDC) and U.S. Army Center for Health Promotion and Preventive Medicine (USA - CHPPM) to differentiate location of deployment and will include whatever data are available in these analyses. Basic geographic information, including duty and home address for all participants, is included. Women were oversampled in Panels 1, 2, and 3. In Panel 2, to achieve a higher proportion of Marines, the population was comprised of 20% Marines and 80% other service branches (Army, Navy, Air Force, and Coast Guard). Different races/ethnicities have not been oversampled in any panel. The mean age for Panel 1 at baseline is 35 years, Panel 2 is 24 years, and Panel 3 is 24 years, with an average age of 27.6 years for all 3 panels at baseline. More than 70% of cohort members who submitted baseline data have submitted at least one follow-up questionnaire. Approximately 88% of participants completed the questionnaire via the online questionnaire in the 2007 survey cycle. Frequency of Data Collection: All panels will be followed with repeat surveys at 3-year intervals through 2022. Source of Data: The Millennium Cohort Study is a research platform that prospectively combines self-reported data with inpatient, outpatient, pharmacy, vaccination, personnel, deployment, and occupational data. Multiple standardized instruments (to compare to other civilian and veteran populations) are included in the questionnaire, including the posttraumatic stress disorder (PTSD) Checklist Civilian Version; the Patient Health Questionnaire to assess depression, panic, anxiety, eating disorders, and alcohol-related problems; the Medical Outcome Study Short Form 36-Item Health Survey for Veterans to assess functional health; and the CAGE ques - tionnaire to assess potential problem drinking. Mode of Data Collection: Participants are given the option to complete a web or paper survey. Specific Questions Related to CVD, COPD, Asthma, and/or Diabetes: The Millennium Cohort Study baseline survey asks the following related questions: • “Has your doctor or other health professional ever told you that you have any of the following conditions?” — Hypertension, high cholesterol requiring medication, coronary heart disease, heart attack, angina (chest pain), any other heart condition: please specify, chronic bronchitis, emphysema, asthma, diabetes or sugar diabetes • If marking yes to any of these conditions the participant is asked what year they were first diagnosed and if they were ever hospitalized for the condition. • Other questions on the survey instrument relating to cardiovascular disease, chronic pulmonary disease, asthma, and/or diabetes include: — “In the last 12 months have you had persistent or recurring problems with the following?” Shortness of breath, chest pain — “During the last 4 weeks, how much have you been bothered by any of the following problems?” Shortness of breath, chest pain — “Have you ever been diagnosed with gestational diabetes by a glucose tolerance test during pregnancy?” Information Obtained: Research published in the November 2009 issue of Hypertension investigating the association between deployment and newly reported hypertension found that deployers who reported multiple combat exposures, especially those who personally witnessed death due to war or disaster, were at higher risk for newly reported hypertension, possibly indicating a stress-induced hypertensive effect. Research findings published in the December 2009 issue of the American Journal of Epidemiology high- lighted the first prospective population-based study to include changes in smoking as a covariate for investigation of increased risk for respiratory symptoms, asthma, bronchitis, and emphysema. This study suggested an elevated risk for respiratory symptoms, including persistent and recurring cough and shortness of breath, among Army and Marine Corps personnel deployed in support of the operations in Iraq and Afghanistan.

OCR for page 123
132 A NATIONWIDE FRAMEWORK FOR SURVEILLANCE OF CARDIOVASCULAR AND CHRONIC LUNG DISEASES Follow-up of at-risk populations will allow for better understanding of the potential episodic nature of poten - tially acute and transient or early stages of chronic respiratory and cardiovascular illnesses. Demographic data such as age, geographic home of record, and race/ethnicity are collected through the Defense Manpower Data Center. Income, education level, marital status, and military occupation are all asked on the 2010 Millennium Cohort Study survey. Who Pays for Data Collection?: The Millennium Cohort Study is funded by the DOD through the U.S. Army Medical Research Materiel Command (USAMRMC) Military Operational Medicine Research Program (MOMRP) and conducted at the Naval Health Research Center (NHRC). Dissemination of Data: The Millennium Cohort Study team has published over 30 manuscripts in notable peer- reviewed journals, produced greater than 150 conference presentations and posters since 2001, and has received multiple research awards at notable public health conferences. Findings from the Millennium Cohort Study have been regularly presented to various organizations within the Department of Defense, as well as leading scientific institutions that advise military leaders and policy makers. Additionally, several press outlets, including Reuters Online, the Atlanta Journal Constitution, Forbes.com, and the Defense Military Health System, featured articles on the study’s research. The Millennium Cohort Study surveys are available online to participants during survey cycles. Participants can gain access to the survey by logging-in with their assigned subject ID number and the last four digits of their Social Security number. In order to protect participants’ privacy and within rules governing human subjects research, identifiable data are not shared outside of the NHRC. Collaborations are encouraged and current collaborations exist with many external DOD, VA, academic, and other civilian institutions. Establishment of a memorandum of understanding or other data use agreement and support from one or more Millennium Cohort Study co-investigators must be obtained before data transfer of de-identified data can take place, though collaboration on various projects where data are not transferred is easily accomplished by outside researchers. Multi-Ethnic Study of Atherosclerosis (MESA) Main Purpose of Study: The Multi-Ethnic Study of Atherosclerosis was initiated in July 2000 to investigate the prevalence, correlates, and progression of subclinical cardiovascular disease (CVD) in a population-based sample (Bild et al., 2002). The objectives of MESA are (1) to determine characteristics related to progression of subclinical CVD to clinical CVD; (2) to determine characteristics related to progression of subclinical CVD itself; (3) to assess ethnic, age, and sex differences in subclinical disease prevalence, risk of progression, and rates of clinical CVD; (4) to determine relations of newly identified factors with subclinical disease and to determine their incremental predictive value over established risk factors; and (5) to develop methods, suitable for application in future screening and intervention studies, for characterizing risk among asymptomatic persons. Sample: 6,500 men and women from six regions in the United States: Baltimore City and Baltimore County, Maryland; Chicago, Illinois; Forsyth County, North Carolina; Los Angeles County, California; New York, New York; St. Paul, Minnesota; Approximately 1,083 eligible participants per site (Bild et al., 2002). Minorities are not oversampled. Age range is 45–84, and includes men and women. Response Rate: MESA Exam 1: Among those households contacted, recruiters explained the study to 29.0%, and among those, the participation rate was 39.8%. Among those screened and deemed eligible, the participation rate was 59.8% (from MESA study website). Frequency of Collection and Sources of Data: Examination 1 (July 2000–July 2002); Examination 2 (July 2002–January 2004); Examination 3 (January 2004–July 2005); Examination 4 (July 2005–July 2007). Sources of data include blood samples, medical exam records, and interviews Mode of Data Collection: Medical exam, physical exam, laboratory exam, personal interview. Specific Questions Related to CVD, COPD, Asthma, and/or Diabetes: Baseline measurements will include measurement of coronary calcium using computed tomography; measurement of ventricular mass and function using cardiac magnetic resonance imaging; measurement of flow-mediated brachial artery endothelial vasodilation, carotid intimal-medial wall thickness, and distensibility of the carotid arteries using ultrasonography; measurement

OCR for page 123
133 APPENDIX A of peripheral vascular disease using ankle and brachial blood pressures; electrocardiography; and standard CVD risk factors; blood samples; identification and characterization of CVD events, including acute myocardial infarc - tion and other coronary heart disease, stroke, peripheral vascular disease, and congestive heart failure; therapeutic interventions for CVD; and mortality (Bild et al., 2002). Information Obtained: Prevalence, anthropometry, blood pressure, personal history, diet assessment medical history. Whether it includes clinical care age, race/ethnicity, geographic region, sex. Who Pays for Data Collection?: National Heart, Lung, and Blood Institute (NHLBI) and the National Insti - tutes of Health (NIH). National Longitudinal Study of Adolescent Health (Add Health) Main Purpose of Study: The National Longitudinal Study of Adolescent Health (Add Health) is a study of a nationally representative sample of more than 20,000 individuals that began with in-school questionnaires admin - istered to adolescents in grades 7–12 in the United States during the 1994–1995 school year. Since then, four additional waves of in-home interviews in 1995, 1996, 2001–2002, and 2008 have been conducted, tracking the initial cohort as they transitioned out of adolescence into young adulthood and adulthood. Add Health combines longitudinal survey data on respondents’ social, economic, psychological, and physical well-being with contextual data on the family, neighborhood, community, school, friendships, peer groups, and romantic relationships, providing unique opportunities to study how social environments and behaviors in adoles - cence are linked to health and achievement outcomes in young adulthood. The later waves of interviews expanded the collection of biological data in Add Health to understand the social, behavioral, and biological linkages in health trajectories as the Add Health cohort ages through adulthood. Add Health was developed in response to a mandate from the U.S. Congress to fund a study of adolescent health. The original purpose of the study was to examine adolescent health and health behavior with special emphasis on the effects of multiple contexts of adolescent health. As participants aged into adulthood, however, the scientific goals of the study expanded and evolved. Waves I and II, conducted when respondents were between 12 and 18 years old, focus on the forces that may influence adolescents’ health and risk behaviors, including personal traits, families, friendships, romantic relation - ships, peer groups, schools, neighborhoods, and communities. Wave III, conducted when respondents were between 18 and 26 years old, focuses on how adolescent experi - ences and behaviors are related to decisions, behavior, and health outcomes in the transition to adulthood. Specific aims of Wave III included obtaining relationship, marital, childbearing, and educational histories, and dating key labor force events. Wave IV, the most recent follow-up, was conducted when respondents were between 24 and 32 years old and assuming adult roles and responsibilities. The fourth wave of interviews focused on obesity, stress, and health risk behaviors and expanded the collection of biological data in Add Health to better understand genetic, stress, and pre-disease pathways. Sample Size and Sample for Each Wave • Wave I, Stage 1. 90,118 Adolescent In-School Questionnaires, 164 School Administrator Questionnaires, 20,745 Adolescent In-Home Interviews, 17,669 Parent Questionnaires (parent specific component), 17,713 Parent Questionnaires (child specific component) — A stratified, random sample of all high schools in the United States was undertaken. A school was eligible for the sample if it included an 11th grade and had a minimum enrollment of 30 students. A feeder school—a school that sent graduates to the high school and that included a 7th grade—was also recruited from the community. — A sample of 80 high schools and 52 middle schools from the United States was selected with unequal probability of selection. Incorporating systematic sampling methods and implicit stratification into the Add Health study design ensured that this sample is representative of U.S. schools with respect to region of country, urbanicity, school size, school type, and ethnicity.

OCR for page 123
164 A NATIONWIDE FRAMEWORK FOR SURVEILLANCE OF CARDIOVASCULAR AND CHRONIC LUNG DISEASES hypertension, ischemic heart disease, or obesity. Other risk factors for which information is gathered include current tobacco use and blood pressure at the time of visit. Up to eight medications ordered, administered, or continued may be recorded. From 2011, the plan is to gather laboratory results for total cholesterol, high-density lipoprotein, low-density lipoprotein, triglycerides, glycohemoglobin, and fasting plasma glucose for tests performed in the 12 months prior to the sampled visit by the sampled provider. For NHAMCS-ED, for each sampled ED visit, a series of check-boxes are available to indicate whether the patient has cerebrovascular disease or a history of stroke, congestive heart failure, diabetes, or a condition requiring dialysis; pulse oximetry; and whether the patient is on oxygen. Up to eight medications administered or prescribed may be recorded. Vital signs include initial blood pressure. For NHAMCS-ASC, other than diagnoses and procedures, the abstraction does not collect data on risk factors. Clinical care: For NHAMCS-OPD, information is obtained on clinical care information including verbatim reason for visit; up to three visit diagnoses (ICD-9-CM coded); regardless of visit diagnosis, a series of check- boxes indicate whether the patient has asthma, cerebrovascular disease, chronic renal failure, congestive heart failure, COPD, diabetes, hyperlipidemia, hypertension, ischemic heart disease, or obesity major; reason for visit (new problem, chronic problem, routine; chronic problem flare-up, pre-/post-surgery; preventive care); the names of up to eight medications ordered, supplied, administered, or continued during the visit; other services ordered or provided, including health education and blood and imaging tests; and information about continuity of care, including whether the clinician is the patient’s primary care provider, whether the patient is new or has been seen before, and how often the patient has been seen in the past year. One can, for example, examine all primary care visits for patients with high blood pressure and analyze the medications and other services prescribed for these patients by characteristics of the patient and the hospital. For NHAMCS-ED, data elements collected include the patient’s initial vital signs at triage assessment (tem - perature, blood pressure, heart rate, respiratory rate, pulse oximetry, patient on oxygen, coma scale, pain scale); verbatim reason for visit; up to three visit diagnoses (ICD-9-CM coded); a series of check-boxes indicate whether the patient has cerebrovascular disease or history of stroke, congestive heart failure, diabetes, or conditions requir- ing dialysis; the names of up to 8 medications ordered or administered; other services and procedures performed (including BUN/creatinine, cardiac enzymes, glucose, cardiac monitor, ECG/EKG); information on previous care in the same ED in the past 72 hours and 12 months, and discharge from a hospital within past 7 days; informa - tion about patient flow, including length of time to initial treatment by a physician and total visit length; and visit disposition, including admission to the hospital, the type of unit to which admission occurred, and final discharge diagnosis. Visit times may be especially interesting, as there is some suggestion that hospital inpatients admitted following prolonged stays in the ED may have worse outcomes. For NHAMCS-ASC, data elements collected include up to 5 visit diagnoses (ICD-9-CM coded); up to 7 surgical procedures; time in the operating room before, during, and after surgery; up to 12 prescriptions and over-the-counter medications and anesthetics administered during the visit or provided or prescribed at discharge; and details about anesthesia administration, including the type(s) of anesthesia and the training and specialty of the provider. Information about surgical outcomes, including symptoms present during and after the procedure, discharge to the ED or hospital, and medical care sought at 24 hours is also gathered. Cost of Survey/Registry: $5.9 million, not including the central NCHS infrastructure Who Pays for Data Collection?: NCHS pays for collection of core data elements. Sponsors pay for develop- mental work, additional questions, and supplemental modules associated with their topics of interest. For example, in 2010 NCI and CDC are collaborating to develop a colonoscopy supplement to the NHAMCS-ASC module. Dissemination of Data: Public-use files are available online, free to anyone. The files undergo disclosure review to minimize the potential for disclosure of hospitals and individuals included in the survey. These files are usually released within 15 months of the end of data collection period, which is about 19 months after the end of the calendar year. A prototype for an online query system to include NHAMCS-ED data is currently under development. It is hoped that other data sets will be included in the future. The data are available at http://www. cdc.gov/nchs/ahcd/ahcd_questionnaires.htm. Comments: The biggest challenges are lack of timeliness, lack of longitudinal data to provide better informa - tion on transitions and outcomes, and inadequate sample sizes to produce state estimates. All of these barriers

OCR for page 123
165 APPENDIX A could be overcome with increased resources. To better assess patients’ risk factors and the appropriateness of care, like the potential described above for NAMCS, NHAMCS-OPD could expand the data collected on clini - cal management and risk factors during the 12 months before the sampled visits. For patients with hypertension, hypercholesterolemia, or prior stroke, for example, the survey could collect the number of visits, medications, prescribed, changes in medications, and family history. NHAMCS is still a paper and pencil activity. Conversion to computerized data collection and more general conversion to collect data from electronic data sources must be addressed as the healthcare information technology infrastructure changes. Although there are still too few hospitals with electronic systems to gather the representative data through health information exchange, recent legislation is expected to change this landscape dramatically. Options are being explored for gathering data electronically through a single integrated National Hospital Care Survey to cover OPD, ED, ASC, and inpatient care. In addition to ultimately providing data in a more timely fashion, the integrated survey would permit patient linkage for care across these hospital settings in the future permit linkage with the National Death Index and CMS databases. National Hospital Discharge Survey (NHDS) Main Purpose of Study: The National Hospital Discharge Survey is a continuing general purpose survey of inpatient hospital care in the United States, ongoing since 1965. Its purpose is to provide accurate, relevant, nationally representative data annually about hospital discharges. Primary areas of interest include monitoring trends in the use of hospital care for different conditions, describing demographic characteristics of patients receiving hospital care for different conditions, and monitoring diffusion of new medical and surgical procedures to treat specific conditions. Sample: About 150,000 inpatient discharges from 239 hospitals annually for 2008 through 2010. In 2007 and prior years, sample sizes were approximately twice as large. Sample design and geographic stratification: The scope of NHDS encompasses discharges from noninstitutional hospitals, excluding federal hospitals, located in the 50 states and the District of Columbia. Only hospitals having six or more beds staffed for inpatient use are included in the survey. General (medical and surgical) and children’s general hospitals are included, regardless of length of stay, but other hospitals are included only if they have an average length of stay fewer than 30 days. The 1988 sample was selected from a frame of short-stay hospitals listed in the 1987 SMG Hospital Market Data Base. The NHDS redesign in 1988 implemented a modified 3-stage design that employed stratification by creat - ing both primary sampling unit (PSU) and hospital strata defined within the four major Census regions and based on characteristics such as metropolitan statistical areas (MSAs)/non-MSA status and data collection type (manual or automated). Units selected at the first stage of sampling consisted of either hospitals or geographic areas (i.e., PSUs), such as counties, groups of counties, or MSAs. Within the sampled PSUs, additional hospitals were selected with probabilities proportional to their annual number of discharges. Finally, at the last stage, discharges within hospitals were selected using systematic random sampling. Third-stage sampling rates were determined by the hospital’s sampling stratum and the data collection method used. The target sample for manual system hospitals was 250 discharges annually, whereas discharges from some automated hospitals were oversampled, depending on whether NCHS received a sample or a census file of their discharges. The hospital sample has been updated approximately every 3 years to allow for hospitals that opened or changed their eligibility status since the previous sample update. Hospitals that were no longer eligible for NHDS have been deleted. Geographic levels included in sample: NHDS is designed to make national, as well as regional estimates, where regions are defined to be the four major Census regions: Northeast, Midwest, South and West. With additional resources, NCHS has the capacity for state-based sampling and estimation of information about inpatient hospital care. Demographic composition of the sample: As noted above, data are representative of inpatient hospital dis - charges, where “inpatient” is defined by the hospital. Because the survey samples discharges, not patients, a small number of sampled records may be readmissions; however, the survey does not have a mechanism to track these cases. Patients of all ages, sexes, races, and ethnicities are included in the sample. Response rate: In 2007, the most recent year for which final response rate information is available, the unweighted response rate was 88%. The response rate weighted to account for the probability of selection was 82%.

OCR for page 123
166 A NATIONWIDE FRAMEWORK FOR SURVEILLANCE OF CARDIOVASCULAR AND CHRONIC LUNG DISEASES Frequency of Data Collection: Annual. Data are gathered throughout the year. 2010 is the last year that NCHS plans to conduct the current NHDS (see Comments below). Source of Data and Mode of Data Collection: Two data collection procedures are used for the survey. The first is a manual system of sample selection and data abstraction, which was used for approximately 55% of the responding hospitals in 2007. The second is an automated method, which was used for approximately 45% of the responding hospitals in 2007. The automated method involves the purchase of computerized data files from abstracting services or state data systems, or transmissions from the hospitals themselves. In the manual system, the sample selection and the transcription of information from the hospital records to abstraction forms are performed at the hospitals. Of the hospitals using this system in 2007, about 23% had the work performed by their own medical records staff. In the remaining hospitals using the manual system, person - nel of the U.S. Bureau of the Census did the work on behalf of NCHS. The completed forms, along with sample selection control sheets, were forwarded to a contractor for coding and data entry, and then to NCHS for editing and weighting. For the automated system, NCHS purchased files containing machine-readable medical record data from which records were systematically sampled by NCHS. All the information comes from Uniform Billing (UB)-04 forms, the format in which hospitals submit claims for payment. Specific Questions Related to CVD, COPD, Asthma, and/or Diabetes: See medical record abstraction form at http://www.cdc.gov/nchs/data/hdasd/nhds_form_updated.pdf. Information Obtained: Frequencies and rates of inpatient hospitalizations for specific diagnoses (determined by ICD-9-CM coding) are useful in describing disease burden. To the extent that acute events, such as acute myo - cardial infarction, result in hospital admissions, and are properly diagnosed, national hospital discharge data may represent the best opportunity for monitoring incidence nationally. Improvements to these data are possible, and as noted below under Comments, NCHS has been working with NHLBI and CDC to better realize that potential. The survey does not collect information on the prevalence of conditions or functional health outcomes. Demographic data: Data are collected on the patient’s date of birth, sex, ethnicity, and race. Data on ethnicity are missing at such a high rate that the missing rate, and the data themselves, are not reported and are not used routinely. For example, for 2007, 49% of the discharge records in NHDS data set had ethnicity missing. Data are also collected on the expected source(s) of payment for the visit. Risk factors/stressors: Limited to those coded as diagnoses or procedures. For example, some discharge diag - noses, such as diabetes, may be risk factors for others, such as heart disease or stroke. Clinical care: Information is obtained on up to 7 discharge diagnoses and 4 procedures performed. Data are also collected on admission and discharge dates and discharge status. Beginning in the 2001 survey year, two additional items were included in the medical abstract form: type of admission and source of admission. In late 2007, an admitting diagnosis and a present on admission check-box for all of the diagnosis variables were added to data collection because hospitals were required to collect this information for billing effective at that time. Cost of Survey/Registry: $2.5 million for FY 10, excluding the central NCHS infrastructure Who Pays for Data Collection?: NCHS pays for data collection. Dissemination of Data: Public-use files are available online, free to anyone. The files undergo disclosure review to minimize the potential for disclosure of hospitals and individuals. Currently, development is a prototype for an online query system that will include NHAMCS-ED data, and NHDS hopes to include other data sets in the future. The data are available at http://www.cdc.gov/nchs/nhds/nhds_questionnaires.htm. Comments: Historically, to minimize the burden on hospitals and to ensure complete and representative data, NHDS has been tied to the UB-04. Unfortunately, this has limited the flexibility of the survey to gather more detailed information. Over the past 5 years, NHDS has tested methods to selectively sample discharged patients with specific characteristics (especially diagnoses) and obtain additional information from the medical records of these discharged patients. Part of this process has involved testing an acute coronary syndrome (ACS) module in collaboration with NHLBI and CDC’s National Center for Chronic Disease Prevention and Health Promotion. The purpose of this module is to gather laboratory data to improve the validity of AMI discharges identified solely on the basis of discharge diagnosis. The ACS module tested the collection of troponin data from discharges with a diagnosis of acute myocardial infarction (AMI) or other acute and subacute ischemic heart disease (ICD-9-CM:

OCR for page 123
167 APPENDIX A Demographic Composition of National Hospital Discharge Survey, 2007 Unweighted Frequency Unweighted Percent Age Group Less than 15 years 62,392 17.1 15–44 years old 100,047 27.4 45–64 years old 83,881 22.9 65 years or older 119,328 32.6 Sex Female 215,106 58.8 Male 150,542 41.2 Race White 191,058 52.3 Black/African American 51,303 14.0 American Indian/Alaskan 1,134 0.3 Native Asian 3,863 1.1 Native Hawaiian/Other Pacific Islander 198 0.1 Other 9,488 2.6 Multiple race 152 0.0 Missing 108,452 29.7 410-411). These tests illustrated that it was possible both to systematically oversample specific discharge diag - noses and to obtain information on troponins from patients with a discharge diagnosis of AMI or other acute and subacute ischemic heart disease. Further developmental work is needed to evaluate the usefulness of this module in monitoring the incidence of AMI, from hospital discharges with and without a discharge diagnosis of AMI. Important next steps include (1) testing the ACS module in a larger sample of discharges from a more varied set of hospitals and (2) testing the feasibility of gathering similar data from patients with other discharge diagnoses, such as old myocardial infarction; angina pectoris; other forms of chronic ischemic heart disease; hypertensive heart disease; cardiac dysrhythmia; heart failure; and acute edema of the lung, unspecified. A new hospital survey with the flexibility to include such modules as well as linkages with the National Death Index and CMS databases is planned for the future. That integrated National Hospital Care Survey would permit linking patients’ care across OPD, ED, ASC, and inpatient hospital settings. The integrated survey would rely on electronic transmission of UB-04 data and clinical data from EHR systems, as the capabilities in the new national sample of hospitals permit. New York City Community Health Survey Main Purpose of Study: The Community Health Survey (CHS) is conducted in order to inform public health policy and practice in New York City, making data use and dissemination cornerstones of the project. The CHS data have three main roles in public health work: instrumental, that is, influencing health program decisions; con - ceptual, that is, increasing the understanding of the relationship between health behavior and health status; and ersuasive, that is, supporting health policies Sample: Approximately 9,500 interviews each year since 2002. It includes men and women aged 18 and older. The CHS uses a stratified random sample to produce neighborhood and citywide estimates. Strata are defined using the United Hospital Fund’s (UHF’s) neighborhood designation, modified slightly for the addition of ZIP codes added since the initial UHF definitions. There are 42 UHF neighborhoods in NYC, each defined by one or more adjoining ZIP codes. Response rates vary by year. For the most recent survey for which data are publicly available (2008 CHS), AAPOR Response Rate #3=33.3%, Cooperation Rate #3=80.7% Frequency of Collection and Sources of Data: Annually since 2002; Population interviews

OCR for page 123
168 A NATIONWIDE FRAMEWORK FOR SURVEILLANCE OF CARDIOVASCULAR AND CHRONIC LUNG DISEASES Mode of Data Collection: Telephone interviews using RDD landline sample (2002–2008) and RDD landline and cellular telephone sample (from 2009 on) Specific Questions Related to CVD, COPD, Asthma, and/or Diabetes: The CHS contains multiple measures related to these conditions. Multiple health surveillance measures, varies by year. Questionnaires for each year can be downloaded at http://www.nyc.gov/html/doh/html/survey/chsdata.shtml. Information Obtained: Multiple health surveillance measures. Not all measures are asked each year. Most are designed to provide prevalence estimates. Risk factor information is limited self-report (e.g., asked if taking medications for hypertension). Multiple demographic variables are collected, including age, ethnicity, race, ZIP code location, household income, education level, employment status, health insurance status, and others. Who Pays for Data Collection: The cost of running the survey is approximately $1 million per year. It is funded with a city tax levy. External (grant and private) funds have supported some modules of the CHS in the past. Dissemination of Data: SAS-formatted data sets 2006–2008 are available at http://www.nyc.gov/html/doh/ html/survey/chsdata.shtml. Data sets for 2002–2005 are available directly from the DOHMH. Along with data from the 2009 CHS, these will be posted to the public website in the future. Visit EpiQuery at http://www.nyc. gov/html/doh/html/epi/epiquery.shtml. Data sets are publicly available. New York City Community Health Survey Heart Follow-up Study Main Purpose of Study: The primary objective of the CHS Heart Follow-up Study is to estimate a baseline population sodium intake for NYC; Secondary objectives are to: estimate mean sodium intake by race/ethnicity; estimate the prevalence of awareness, treatment, and control of hypertension; assess the relationship between blood pressure (both self-reported and physical measurement) and sodium intake; and assess the relationship between potassium intake and blood pressure. Sample: Approximately 1,800 interviews from the CHS 2010 will be completed, resulting in about 1,500 usable urine samples. The surveys will be conducted citywide. Men and women aged 18 and older are included. Frequency of Collection and Sources of Data: April through August 2010. A follow-up study is planned for 2014, if funding is available. Sources of data are population interviews with some clinical measures. Mode of Data Collection: Telephone interviews using RDD landline and cellular telephone sample, plus 24-hour urine collection and in-person clinician measurements of height, weight, waist circumference, and rest - ing blood pressure Specific Questions Related to CVD, COPD, Asthma, and/or Diabetes: In addition to the CHS 2010 questions, participants in the Heart Follow-up Study complete a brief questionnaire including questions on nutrition and personal and family history of CVD. Information Obtained: Measures will include items from the 2010 CHS as well as a separate series of ques - tions related to dietary sodium consumption. Multiple variables, including age, ethnicity, race, ZIP code location, household income, education level, employment status, health insurance status, and other will be collected. Who Pays for Data Collection?: The OPTS cost of the 2010 CHS Heart Follow-up Survey is approximately $1.2 million. The Robert Wood Johnson Foundation provided about $566K, Kellogg Foundation provided $98K, New York State Health Foundation provided $181K, and the Centers for Disease Control and Prevention provided $88K in support of the study. NYC DOHMH has funded about $22K through city tax levy funds. Dissemination of Data: When the study has been completed, data will be accessible via EpiQuery and used for a range of agency and city activities. The data set will be publicly available. New York City Health and Nutrition Examination Survey Main Purpose of Study: Specific objectives of NYC HANES are to: estimate the number and percent of persons in the NYC population with selected diseases and risk factors; estimate citywide awareness, treatment, and control of selected diseases; estimate prevalence, awareness, treatment, and control of selected diseases among a limited set of demographic subgroups identified by race/ethnicity, gender, and broad age bands; monitor prevalence and

OCR for page 123
169 APPENDIX A magnitude of environmental exposures in NYC; analyze risk factors for selected diseases in NYC; and establish a population-based serologic repository that can be used to explore emerging public health issues in NYC. Sample: Noninstitutionalized adult New York City residents aged 20 years or older. 3-stage cluster sampling design (geographic segment, household, individual). Of the 4,026 households randomly selected for the survey, eligibility screening questionnaires were completed for 3,388 households and 3,047 study participants were identified. Of those identified, 1,999 individuals participated in the survey, yielding a response rate of 55%. Post stratification weighting based on age group, sex, race/ethnicity, borough was applied to minimize the impact of component and item nonresponse. Frequency of Collection and Sources of Data: The survey was conducted once in 2004. It will repeat as serial cross-sectional at regular intervals, if funding is available. Sources of data are population interviews with clinical measures. Mode of Data Collection: face to face computer-assisted interviews; audio computer-assisted self-interview (drug use, sexual behavior, incarceration, violence); and physical exam with blood draw, urine collection, and anthropometry (10% conducted in home; 90% in clinic). Specific Questions Related to CVD, COPD, Asthma, and/or Diabetes: Yes. The questionnaires can be down- loaded at http://www.nyc.gov/html/doh/html/hanes/datasets.shtml. Information Obtained: Prevalence and incidence of selected diseases and risk factors for selected diseases; awareness, treatment, and control of selected diseases; and the prevalence and magnitude of environmental expo - sures. Demographic information collected includes multiple variables, including age, ethnicity, race, household income, education level, employment status, health insurance status, and others. Cost of Survey: For HANES, personnel is a costly due to fieldwork. In 2003–2005, total cost was $3,397,273. Lowball estimate for a second NYC HANES with same design is $5 million. This includes a contract for survey operations, but no contract for technical support for sampling, training, or IT. Who Pays for Data Collection?: 2004 NYC HANES funded by NYC DOHMH almost exclusively through city tax levy funds. Most field staff were reassigned from their regular jobs at DOHMH, and school nurses were paid overtime. No funds have been identified for a second NYC HANES. DOHMH contracted with NCHS to provide IT and other technical support. NYC DOHMH is seeking external funding in collaboration with academic partners. Dissemination of Data: Variable lists, documentation, codebooks, and data sets are available at http://www. nyc.gov/html/doh/html/hanes/datasets.shtml. Visit EpiQuery: https://a816-healthpsi.nyc.gov/epiquery/EpiQuery/ NYCHANES/index.html. Data sets are publicly available. New York City Youth Risk Behavior Survey Main Purpose of Study: The YRBS data have three main uses: instrumental, that is, the data influence health education program decisions; conceptual in that they increase the understanding of the health status of New York adolescents; and persuasive in that they support health policy positions. The Bureau of Epidemiology Services uses YRBS data in Vital Signs publications on health behaviors of NYC public high school students. Sample: 1,500–10,000 annually. From 1993 through 2001, the NYC YRBS was designed to provide data on a citywide level. In 2003 the survey was expanded to provide borough-level data. It was further expanded in 2005, 2007, and 2009 to data for the three District Public Health Office (DPHO) areas in the South Bronx, North and Central Brooklyn, and East and Central Harlem, as well as borough and citywide estimates. It includes public high school students (grades 9–12) in New York City. The YRBS does not include students in juvenile detention centers. English as a Second Language (ESL) and special education classes in otherwise-eligible high schools are also excluded from the sample. The overall response rate for each YRBS stratum needs to be at least 60% to be used. Frequency of Collection and Sources of Data: Data are collected every other year since 1993 through popula- tion interviews. Mode of Data Collection: Self-administered, paper questionnaire Specific Questions Related to CVD, COPD, Asthma, and/or Diabetes: The YRBS is designed to monitor prior- ity health-risk behaviors that contribute to the leading causes of mortality, morbidity, and social problems among youth in New York City. The questionnaire measures tobacco, alcohol and drug use; behaviors that contribute to

OCR for page 123
170 A NATIONWIDE FRAMEWORK FOR SURVEILLANCE OF CARDIOVASCULAR AND CHRONIC LUNG DISEASES unintentional injury and violence; sexual behaviors; dietary behaviors; and physical activity. It also monitors the prevalence of obesity and asthma. Information Obtained: Prevalence and incidence of selected diseases and risk factors for selected diseases; awareness, treatment, and control of selected diseases; and the prevalence and magnitude of environmental expo - sures. Multiple demographic variables are collected, including age, ethnicity, and race. Who Pays for Data Collection?: The OPTS cost of the 2009 YRBS was $180,000. It is funded with CDC dollars and city tax levy. Dissemination of Data: Variable lists, documentation, codebooks, and data sets are available at http://www. nyc.gov/html/doh/html/episrv/episrv-faq-yrbs.shtml. Data sets are publicly available. Visit EpiQuery: https:// a816-healthpsi.nyc.gov/epiquery/EpiQuery/NYCHANES/index.html. Primary Care Information Project Main Purpose of Study: Tracking of medical care indicators for improving the delivery of recommended pre - ventive services (list limited to cardiovascular related indicators): Aspirin/antithrombotic therapy, blood pressure control, cholesterol control, smoking cessation intervention, diabetes care indicators (A1c test, A1c control, lipid screening, lipid control), asthma symptom assessment and control (ages 5–56, adult and pediatric indicators can be stratified). Sample: Nearly 1,800 providers are using the EHR system, representing over 100,000 encounters per month. The data base will increase in the next two years as an estimated additional 2,500 providers will be transmitting information to PCIP. The geographic stratification is citywide. The geographic levels included are provider, prac - tice, ZIP code, borough, and citywide. The age ranges are currently based on quality metric collected (e.g., blood pressure control measure age range includes patients 18 to 75). Frequency of Collection and Sources of Data: All providers with EHR have the capacity to transmit the data. Estimated 80% of practices with EHRs are transmitting information. Data are collected monthly. Mode of Data Collection: Automated medical chart abstraction facilitated by electronic health records main - tained by independent primary care practices (this currently includes small practices, community health centers, and outpatient hospitals) Automated electronic transmission of extracted data fields from the medical charts to a secure data warehouse maintained by PCIP. Specific Questions Related to CVD, COPD, Asthma, and/or Diabetes: Smoking status, smoking cessation intervention, A1c control (< 7%), A1c testing, antithrombotic tx (IVD or DM), body mass index, BP Control in DM (130/80), BP Control in HTN (140/90), BP Control in IVD (140/90), cholesterol control (genl pop), cholesterol screen (genl pop), LDL control (high risk), LDL testing (high risk), asthma symptom assessment, asthma control (18–56 yrs), depression screening, depression follow-up, depression control, alcohol use screening Information Obtained: CVD disease and risk factor prevalence among all patients seen by providers trans - mitting data to PCIP; control among those with select CVD risk factors as per accompanying quality indicators. Limited patient characteristics as information is aggregated to the provider or practice. Provider and practice demographics currently collected include ZIP code, % Medicaid patients, % Uninsured patients, encounters, number of providers, and FTE of providers. Who Pays for Data Collection: Costs incurred include staffing, associated hardware and software purchases, and maintenance. Estimated $1.2 million per year. It is funded by a New York City tax levy; HEAL5 and HEAL 10 grants from New York State; Regional Extension Center funding from the Office of the National Coordinator for Health Information Technology; Communities Putting Prevention to Work—Tobacco Cessation—Centers for Disease Control; Centers of Excellence—Centers for Disease Control; Agency for Healthcare Research and Quality; Robin Hood Foundation Dissemination of Data: The data are currently used for internal program operations (technical assistance, coaching on quality improvement). Summarized trends and population averages will be made available in the future. Currently, only PCIP staff and providers can access their own data. In the future, summarized information will be made publicly available.

OCR for page 123
171 APPENDIX A State Cardiovascular Health Examination Survey Main Purpose of Study: CDC Division for Heart Disease and Stroke Prevention fund Arkansas, Kansas, Oklahoma, and Washington to collect data on measured levels of blood pressure and blood cholesterol; compare data between priority and general populations; provide information to guide development, implementation, evalu - ation of cardiovascular health promotion and risk factor control strateiges; reduce the burden of heart disease and stroke-related death, disabilities, and cost; eliminate health disparities. Based on the findings, states will develop hypertension and cholesterol control strategies. Frequency of Collection and Sources of Data: Started in 2005. The source of data is questionnaire. Mode of Data Collection: Interview and health exam Specific Questions Related to CVD, COPD, Asthma, and/or Diabetes: Arkansas: blood pressure knowledge/ history, cholesterol knowledge/history, cardiovascular disease knowledge/history, diabetes knowledge/history; Kansas: blood cholesterol, LDL/HDL, triglycerides, blood sugar, HbA1C, Medical history (MI, Angina/CHD, Stroke, TIA, Atrial fibrillation, deep venous thrombosis, pulmonary embolus, peripheral arterial disease, left ven - tricular heart hypertrophy, other heart disease, hospitalization on selected heart conditions, symptoms of angina, congestive heart failure, peripheral arterial disease, heart attack and stroke symptoms, personal history of blood pressure, cholesterol, diabetes, family history of blood pressure, heart attack, high cholesterol, diabetes, apnea); Oklahoma: actions to control high blood cholesterol, history of cholesterol checked, actions to control high cho - lesterol, history of CHD/angina, stroke, other cardiovascular diseases, diabetes, aspirin use, rehab following heart attack, stroke, family health history; Washington: HDL, LDL, VLDL, triglycerides, glucose, blood pressure, pulse Information Obtained: Smoking and tobacco use, drinking, weight history, diet behavior and nutrition, supple- ment use, physical activity, stress aspirin use. Arkansas: age, gender, ethnicity/race, education, income, marital status, employment/occupation, household composition (number of adults, number of children), housing Cost and Who Pays for Data Collection?: Arkansas: $1.1 million in cash, $250,000–$300,000 in kind; Kansas: $800,000 in cash, $250,000 in kind. Funded by the Centers for Disease Control and Prevention’s Division for Heart Disease and Stroke Prevention. Dissemination of Data: Data are not publicly available. Youth Risk Behavior Surveillance System Main Purpose of Study: To monitor priority health risk behaviors among youth. Sample: Varies by component; National Survey ~15,000; In 2007, the national YRBSS received 14,103 ques - tionnaires across 157 schools; state, territorial, tribal, and local surveys ~2,000 per site. National, state, territorial, local, tribal levels have separate surveys. The national survey oversamples black and Hispanic students; measure of size was modified so that it would be more likely to select schools with disproportionately high minority enroll - ment; two classes per grade were selected in schools with large number of minority students. High school students in grades 9–12; There is a middle school questionnaire available as well, but it is done by only 10 to 15 sites per cycle and not at the national level. Response rate varies by survey. In 2007, the school response rate was 81%, the student response rate was 84%, and the overall response rate was 68%. Frequency of Collection and Sources of Data: Every other year, usually during the spring semester of odd numbered years. Students complete the self-administered paper and pencil questionnaire during one class period and record their responses directly on a computer-scannable booklet or answer sheet. Specific Questions Related to CVD, COPD, Asthma, and/or Diabetes: Ever been told by a doctor or nurse that they had asthma?; Ever told by a doctor or nurse that they had asthma and still have asthma? Information Obtained: Asthma, obesity, health risk behaviors. Behaviors that contribute to unintentional inju - ries and violence; tobacco use; alcohol and other drug use; sexual behaviors that contribute to unintended pregnancy and sexually transmitted diseases (STDs), including the human immunodeficiency virus (HIV) infection; unhealthy dietary behaviors; and physical inactivity. Grade level/education level, sex, race/ethnicity.

OCR for page 123
172 A NATIONWIDE FRAMEWORK FOR SURVEILLANCE OF CARDIOVASCULAR AND CHRONIC LUNG DISEASES Cost of Survey and Who Pays for Data Collection?: For the entire surveillance system, the cost is about $6 million per cycle. CDC has funding available across 50 state education agencies and a small number of territories, tribal governments, and large urban school districts during each five-year funding cycle. Dissemination of Data: The national YRBSS are available in ASCII, SPSS, SAS data, SAS formats, and Access formats; go to www.cdc.gov/yrbs; click on National Data Files and Documentation. The public may contact YRBSS for state and district-specific data access. The latest report of 2007 national, state, and local results: http:// www.cdc.gov/mmwr/PDF/ss/ss5704.pdf. The 2009 YRBSS results were released in June 2010. QUALITY PERFORMANCE MEASURES Healthcare Effectiveness Data and Information (HEDIS)—Health Plan Main Purpose of Study: To evaluate performance of health plans; HEDIS Health Plan includes HMOs and PPOs Sample: Mandatory or voluntary (Medicare Advantage) reporting of 702 HMO products and 277 PPO products. A product is an insurance plan at a state level, segmented by Medicare, Medicaid, and Commercial. The total number of covered lives in the plans reporting HEDIS data is estimated at 116 million. Information is collected by state, reported by region. Geographic levels are national, state, regional, and individual plan. Age groups are dependent on the measure; 0–18 for child-related measures, 18–85 for adults, with older ages variable with measure. Response rate: About 85% of HMOs and 40% of PPOs report data—missing plans are mostly smaller Medicaid and commercial plans. Frequency of Collection and Sources of Data: Annual data collection reported by plans in May of the year following services Claims data (diagnoses, procedures, laboratory and pharmacy claims) augmented in some cases by clinical chart reviews (with specified sample size) and patient surveys (random sample of a specific sample size). Mode of Data Collection: Health Plan Consumer Assessment of Healthcare Providers and Systems (CAHPS), a public–private initiative to develop standardized surveys of patients’ experience with ambulatory and facility-level care (HEDIS Measures 2010, NCQA website). Specific Questions Related to CVD, COPD, Asthma, and/or Diabetes: Clinical measures for cardiovascular disease, chronic pulmonary disease, asthma, and diabetes; 2010 HEDIS summary measures include appropriate testing for children with pharyngitis, appropriate treatment for children with upper respiratory infection, avoidance of antibiotic treatment in adults with acute bronchitis, use of spirometry testing in the assessment and diagnosis of COPD, pharmacotherapy of COPD exacerbation, persistence of beta-blocker treatment after a heart attack, compre- hensive diabetes care, relative resource use for people with diabetes, relative resource use for people with asthma, relative resource use for people with cardiovascular conditions, relative resource use for people with uncomplicated hypertension, and relative resource use for people with COPD (HEDIS Measures 2010, NCQA website). Information Obtained: Incidence—indirectly; prevalence—indirectly; functional health outcomes—only with HOS survey used for Medicare advantage plans; risk factors, including stressors—depending on measure but not stressors; clinical care information—with measures; demographic characteristics: Patient level data ONLY in HOS survey (Medicare Advantage plans) Who Pays for the Data Collection?: Plans pay for data collection at MD and patient level; they then submit data in aggregate to NCQA via a standard data collection tool. Dissemination of Data: Processed data available via the NCQA Quality Compass. Anyone can purchase a license to use data within set of restrictions dealing with commercial use of data. Special arrangements can be made for research use. Health plans submit data in aggregate to NCQA via a standard data collection tool.

OCR for page 123
173 APPENDIX A Healthcare Effectiveness Data and Information (HEDIS)—Physicians Main Purpose of Study: To evaluate physician office practices Sample: Open to qualified medical practices (mostly primary care). Practice level data; reported by practice within state and national. All ages are included. About 15,000 physicians in 1,000 practices are recognized. Frequency of Collection and Sources of Data: Every 3 years. Medical record review. Mode of Data Collection: Standardized web-based data collection tools; Provision for direct reporting from some EMR installations Specific Questions Related to CVD, COPD, Asthma, and/or Diabetes: All clinical data, no surveys from patients. 2010 HEDIS measures for physicians include appropriate treatment for children with upper respiratory infection; controlling high blood pressure; cholesterol management for patients with cardiovascular conditions; comprehensive ischemic vascular disease; comprehensive diabetes care; use of appropriate medications for people with asthma; use of spirometry testing in the assessment and diagnosis of COPD; and pharmacotherapy manage - ment of COPD exacerbation (HEDIS Measures 2010, NCQA website). Practice-level demographics; language diversity of membership; race/ethnicity diversity of membership (NCQA website). Dissemination of Data: Researchers can apply to use the data. REFERENCES Bild, D. E., D. A. Bluemke, G. L. Burke, R. Detrano, A. V. Diez Roux, A. R. Folsom, P. Greenland, D. R. Jacobs, Jr., R. Kronmal, K. Liu, J. C. Nelson, D. O’Leary, M. F. Saad, S. Shea, M. Szklo, and R. P. Tracy. 2002. Multi-ethnic study of atherosclerosis: Objectives and design. American Journal of Epidemiology 156(9):871-881. Desai, J., L. Geiss, Q. Mukhtar, T. Harwell, S. Benjamin, R. Bell, and E. Tierney. 2003. Public health surveillance of diabetes in the United States. Journal of Public Health Management and Practice 9:S44-S51. Go, A. S., D. J. Magid, B. Wells, S. H. Sung, A. E. Cassidy-Bushrow, R. T. Greenlee, R. D. Langer, T. A. Lieu, K. L. Mar- golis, F. A. Masoudi, C. J. McNeal, G. H. Murata, K. M. Newton, R. Novotny, K. Reynolds, D. W. Roblin, D. H. Smith, S. Vupputuri, R. E. White, J. Olson, J. S. Rumsfeld, and J. H. Gurwitz. 2008. The Cardiovascular Research Network. Circulation: Cardiovascular Quality and Outcomes 1(2):138-147. Hagan, P. G., C. A. Nienaber, E. M. Isselbacher, D. Bruckman, D. J. Karavite, P. L. Russman, A. Evangelista, R. Fattori, T. Suzuki, J. K. Oh, A. G. Moore, J. F. Malouf, L. A. Pape, C. Gaca, U. Sechtem, S. Lenferink, H. J. Deutsch, H. Diedrichs, J. Marcos y Robles, A. Llovet, D. Gilon, S. K. Das, W. F. Armstrong, G. M. Deeb, and K. A. Eagle. 2000. The Interna - tional Registry of Acute Aortic Dissection (IRAD) new insights into an old disease. The Journal of the American Medical Association 283(7):897-903. Magid, D. J., J. H. Gurwitz, J. S. Rumsfeld, and A. S. Go. 2008. Creating a research data network for cardiovascular disease: The CVRN. Expert Review of Cardiovascular Therapy 6(8):1043-1045. Mokdad, A. H. 2009. The behavioral risk factors surveillance system: Past, present, and future. Annual Review of Public Health 30(1):43-54.

OCR for page 123