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PAPERBACK list:$21.00 Web:$18.90 add to cart Rights & Permissions Free PDF Access Free Resources Sign in to download PDF book and chapters PDF EXECUTIVE SUMMARY Display this book on your site! Related Titles From Cancer Patient to Cancer Survivor: Lost in Transition The Ethical Conduct of Clinical Research Involving Children Other Related Titles Exploring Challenges, Progress, and New Models for Engaging the Public in the Clinical Research Enterprise: Clinical Research Roundtable Workshop Summary (2003) Board on Health Sciences Policy (HSP) Institute of Medicine (IOM) Web Search Builder Use this book's key terms to search within this book, across our collection, or across the Web. Skim This Chapter Skim this chapter and use this chapter's key terms to search within this book. Reference Finder Paste in your own text to find books that relate to your topic. Page 78   E-mail  Facebook  Digg  Stumble  Twitter More Page 78 Front Matter (R1-R14) Workshop Summary (1-4) 1. Priorities for Engaging the Public in the Clinical Research Enterprise (5-8) 2. What is Participant-Centered Clinical Research (9-23) 3. Increasing the Role of the Public in Research Oversight (24-35) 4. Steps to Improve the Translation and Dissemination of the Results of Clinical Research (36-44) Appendix A: Workshop Agenda (45-49) Appendix B: Speaker Biographies (50-53) Appendix C: Background for CRR Workshop: Exploring New Models for Engaging the Public in the Clinical Research Enterprise (54-56) Appendix D: Voluntary Health Agencies and the Clinical Research Enterprise: Exploratory Focus Groups (57-77) Appendix E: Registered Workshop Participants (78-83)

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OCR for page 78
Appendix E Registered Workshop Participants Jane Adams Medtronic, Inc. Bethanie Adels Christopher Reeve Paralysis Foundation Anna Alt-White Mid-Atlantic Regional ORCA (Office of Research Compliance & Assurance) Christine Amorosi Bernard Arons, M.D. National Institute of Mental Health Debra Aronson FASEB Marie Bass DDB Bass & Howes Todd Bentsen Association for the Accreditation of Human Research Protection Programs Anton Bizzell NIH/National Inst. on Alcohol Abuse and Alcoholism Lynn Bosco Agency for Healthcare Research and Quality Beth Bowers National Institute of Mental Health Laura Bowman VA Rehab R&D Andrew Brecher Capitol Associates Sheryl Brining National Center for Research Resources, NIH Voncelia Brown Salisbury University Suanna Bruinooge American Society of Clinical Oncology Martha Bryan Dept. of Veterans Affairs Roger Bulger Association of Academic Health Centers Ruth Bulger USUHS Susan Butler Ovarian Cancer National Alliance Beth Cameron American Cancer Society Michael Campbell Campaign for Medical Research Scott Campbell American Diabetes Association Shannon Campbell University of Kansas 78

OCR for page 79
APPENDIX E Edward W. Campion, M.D. New England Journal of Medicine Ruth Carroll Salisbury University's IRB Ann Carroll Juvenile Diabetes Research Foundation Charlotte Catz,MD NICHD NIH Dolph Chianchiano National Kidney Foundation, Inc. C. Norman Coleman NCI Elaine Collier NCRR Sarah Comley Barbara Conley National Cancer Institute Rosaly Correa-de-Araujo Agency for Healthcare Research and Quality Thomas Crist Alliance for Academic Internal Medicine Barbara Crowl FDA/CDRH Charmaine Cummings NCI Nancy Daly ASTRO Patty Delaney FDA Evan DeRenzo Washington Hospital Center Anne Dievler U.S. General Accounting Office Diane Dorman National Organization for Rare Disorders Tricia Dorn Dept. of Veterans Affairs 79 Pat El-Hinnawy HHS-OPHS Judith Ellis HRSA/HAB/DTTA Rebecca Farkas NIH Ellen Feigal National Cancer Institute Clare Feinson Brian Feit HRSA/HAB/DCBP/CFSB Kenneth Fischheck NINDS, NIH Lorraine Fitzsimmons NINDS/NIH Yolanda Fleming National Medical Association Henry Francis Nat'1 Inst. on Drug Abuse, NIH Ellen Gadbois U.S. Department of Health and Human Services Barbara Galen Biomedical Imaging Program, NCI Bill Galey Howard Hughes Medical Institute Albert Gaw American Psychiatric Association Tina Gaw S.F. General Hospital Steve Gibson The ALS Association Megan Gordon American Cancer Society Karen Graham Dana Foundation David Grandison Meharry Medical College - CRC

OCR for page 80
80 Jeannine Greenfield DHHS, Office on Women's Health Stephen Groft Office of Rare Diseases, NIH Jessie Gruman Center for the Advancement of Health Katherine Hammitt Sjogren's Syndrome Foundation Elisabeth Handley National Cancer Institute Maureen Hannley American Academy of Otolaryngology Terry Hartnett Clinical Trials Advisor Anthony Hayward NIH, NCRR Patricia Hinton America Heart Association Deborah Hirtz NINDS Patricia Hodgson Duke Clinical Research Institute Charlotte Holden Office of Human Subjects Research Joanne Howes DDB Bass & Howes Marsha Hurst Sarah Lawrence College David Introcaso AHRQ Jane Jacobs National Institute of Mental Health Sunny Jain MedInSys Scott Jenkins The Blue Sheet ENGAGING THE PUBLIC IN THE CLINICAL RESEARCH ENTERPRISE Jerry Johnson University of Pennsylvania Wendy Johnson-Taylor NIH, Division of Nutrition Research Coordination Lorraine Jordan AANA Lisa Kaeser National Insititute of Child Health and Human Development Andrea Kalfoglou Genetics and Public Policy Center Kelly Green Kahn NIH/NIAAA Sharon Karnash Duke Clinical Research Institute Sarah Keitt Society for Women's Health Research Jon Kerner DCCPS/NCI/NIH Felix Khin-Maun-Gyi Chesapeake Research Review, Inc. Michelle Kirkwood American Society of Clinical Oncology Charma Konnor Food & Drug Administration Theodore Kotchen Medical College of Wisconsin; NIH Peter Kragel Brody School of Medicine Judith Kramer Duke Clinical Research Institute Steven Krosnick, M.D. National Cancer Institute Carol Lambert, Ph.D. NIH, National Center for Research Resources Elizabeth Lancet American Lung Association

OCR for page 81
APPENDIX E Joel Lee Vanderbilt Medical Center Maria Len-Rios University of Kansas David LePay FDA Monica Liebert American Urological Association Laura Livingston American Society of Clinical Oncology Cindy Lollar National Cancer Institute Barbara Marone Amer. College of Emergency Physicians Jeffrey Martin Parkinson's Action Network Mary Martin FindingCures, Inc. Ana Karina Mascarenhas Boston University Goldman School of Dental Medicine Molly Matthews Matthews Media Group Mary Anne McDermott Hunter College of CUNY Gladys Melendez National Institutes of Health Vijaya L. Melnick Immunology Center, GUMC James Melton DCRI Margo Michaels NCI Mary Ellen Michel NINDS/NIH Kenneth Miller American Association of Colleges of Pharmacy 81 Paolo Miotti Office of AIDS Research, Office of the Director Pamela Mitchell University of Washington School of Nursing Liz Moench MediciGroup Dena Morris Parent Project Muscular Dystrophy Thuy Morzenti NCI Jay Moskowitz Penn State University Hassan Movahhed Amgen Richard Mowery National Institute of Dental and Craniofacial Research Esther Myers, PhD, RD, FADA American Dietetic Association David Nielsen American Academy of Othlaryngology-Head and Neck Surgery Jean Noronha NIMH Ruth Nowjack-Raymer National Institute of Dental and Craniofacial Research Joanne Odenkirchen NIH/NINDS Asua Ofosu American Thoracic Society Richard Okita NIH, NIGMS Kathleen Oliver Johns Hopkins University Christian Osburn NCI Ron Palomares American Psychological Assn

OCR for page 82
82 Amisha Pandya DHHS,HRSA,BPHC,ODEAR Beth Parker National Breast Cancer Coalition Suzanne Pattee Cystic Fibrosis Foundation Elizabeth A. Patterson ACRIN Cindy Paulsen VA ORCA @ Hines VAMC Douglas Peddicord ACRO (Association of Clinical Research Organizations) Judy Perotti Y-ME National Breast Cancer Organization Bruce Pihlstrom NIDCR / NIH Denise Pintello National Institute on Drug Abuse Shelly Pollard National Institutes of Health Fareen Pourhamidi American Academy of Otolaryngology Louis Quatrano NCMRR, NICHD, NIH Jim Reichmann Matria Healthcare Rose Marie Robertson American Heart Association Marvin Rogul International Pemphigus Foundation Richard Rose American Osteopathic Association Kurt Sanderson Juvenile Diabetes Research Foundation Naomi Scheman University of Minnesota Giselle Schneider American Academy of Pediatrics ENGAGING THE PUBLIC IN THE CLINICAL RESEARCH ENTERPRISE Daniela Seminara Vera Hassner Sharav Alliance for Human Research Protection (AHRP) Heller An Shapiro Osteogenesis Imperfecta Foundation Angela Sharpe Consortium of Social Science Associations Ira Shoulson University of Rochester Chris Simpson Ohio University College of Osteopathic Medicine Ruhi Singh American Heart Association Deborah Smith NIH/NIDA Margaret Snyder Office of Extramural Research, NIH Barbara E Solt Institute for the Advancement of Social Work Research Bert Spilker Consultant Edward Staab National Cancer Institute James Stables NINDS, NIH Gary Stanziano Kim Stitzel American Dietetic Association Karen Studwell American Psychological Association Alice Tangredi-Hannon Thomas Jefferson University Linda Temple RAPS Nancy Thomas Mount Sinai School of Medicine

OCR for page 83
APPE..ND.~. ~ Terry Toigo FDA Robert Trachtenberg National! Institute of Dog Abuse Ursula Utz, Ph.~. ~~ AS Mary Ann V~ in Nylons Cancer Institute ,]~i~r Gore Vetter Office of the :~:~eCtor? MM Mohan Y~swanathan National Center for Beseech Resources' NIM Kns£~ Walling American Hem Association ~~a Waterman YHA David A. Weber, Jaw.. Depth of Ve~:~s Airs JR} We: Applied Climca1 Thus magazine Susan L. Weiner The Chit~ents Cause, Inc Susan Weiss ADA Barbara Wells :BPHCMRSA Alana Wader N~ Breast Cancer Coalition Orn-~nong W'cha~um Genre Mason {Juivers~ty Allison W~chman' MA NIH, twice of Human Subjects Beseech Roy Wu :Nat~nal Cancer Instable David Wynes Sty of Iowa Laune Yelle Nazik Zakam Gouge Mason University B=m Zuc.kerman FDA

Representative terms from entire chapter:

heart association