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Sharing Clinical Research Data: Workshop Summary (2013)

Chapter: Appendix B: List of Data-Sharing Initiatives

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Suggested Citation:"Appendix B: List of Data-Sharing Initiatives." Institute of Medicine. 2013. Sharing Clinical Research Data: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18267.
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Suggested Citation:"Appendix B: List of Data-Sharing Initiatives." Institute of Medicine. 2013. Sharing Clinical Research Data: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18267.
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B List of Data-Sharing Initiatives1 Alzheimer’s Disease Neuroimaging Initiative (ADNI) http://adni-info.org Analgesic Clinical Trials Innovation, Opportunities and Networks (ACTION) Initiative http://www.fda.gov/AboutFDA/PartnershipsCollaborations/PublicPrivate PartnershipProgram/ucm231130.htm Arch2POCM (Archipelago to Proof of Clinical Mechanism [Phase IIa]) http://sagebase.org/WP/arch Biogrid Australia http://www.biogrid.org.au/wps/portal Biomarkers Consortium Project on Adiponectin http://www.biomarkersconsortium.org/press_release_adiponectin_ predictive_biomarker.php 1 This list of data-sharing projects is not an exhaustive list, and inclusion does not denote endorsement. The list includes projects that share different types of data and health information (e.g., genetic information, observational data, etc.) as potential sources of best practices/lessons learned that may be applicable to initiatives focused on sharing data from preplanned interventional studies of human subjects. 101

102 SHARING CLINICAL RESEARCH DATA Biosense (CDC) http://www.cdc.gov/biosense caBIG (Cancer Biomedical Informatics Grid) http://cabig.cancer.gov CAMD (Coalition Against Major Diseases) and C-Path Alzheimer’s Database http://www.c-path.org/News/CDISCTAStds%20PR-24June2012.pdf Cancer Commons http://cancercommons.org/wp-content/themes/cancer_commons/docs/ cancer_commons_whitepaper.pdf http://www.cancercommons.org/about CDC’s Chronic Fatigue Syndrome Wichita Clinical Study http://www.cdc.gov/rdc/B1DataType/Dt132.htm http://www.cfids.org/advocacy/testimony-vernon-oct2008.pdf Clinical Trial Comparator Arm Partnership (CTCAP) http://sagebase.org/partners/CTCAP.php ClinicalTrials.gov http://www.nlm.nih.gov/pubs/factsheets/clintrial.html The database of Genotypes and Phenotypes (dbGaP) http://www.ncbi.nlm.nih.gov/gap DataSphere Project (CEO Roundtable on Cancer) http://ceo-lsc.org/projectdatasphere The “ePlacebo” Database http://www.genome.gov/19518664 Informatics for Integrating Biology and the Bedside (i2b2) https://www.i2b2.org Innovative Medicines Initiative (IMI) European Medical Information Framework (EMIF) http://www.imi.europa.eu/content/home

APPENDIX B 103 International Severe Adverse Events Consortium (iSAEC) http://www.saeconsortium.org Kaiser Permanente Research Program on Genes, Environment, and Health (RPGEH) and UCSF Biobank http://www.dor.kaiser.org/external/DORExternal/rpgeh/index.aspx Mini-Sentinel http://mini-sentinel.org/about_us NEWMEDS http://www.newmeds-europe.com One Mind Initiative http://1mind4research.org/programs Parkinson’s Progression Markers Initiative (PPMI) http://ppmi-info.org PatientsLikeMe http://www.patientslikeme.com/about Sage Bionetworks http://sagebase.org/info/index.php Structural Genomics Consortium (SGC) http://www.thesgc.org tranSMART http://www.transmartproject.org/index.html

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Pharmaceutical companies, academic researchers, and government agencies such as the Food and Drug Administration and the National Institutes of Health all possess large quantities of clinical research data. If these data were shared more widely within and across sectors, the resulting research advances derived from data pooling and analysis could improve public health, enhance patient safety, and spur drug development. Data sharing can also increase public trust in clinical trials and conclusions derived from them by lending transparency to the clinical research process. Much of this information, however, is never shared. Retention of clinical research data by investigators and within organizations may represent lost opportunities in biomedical research. Despite the potential benefits that could be accrued from pooling and analysis of shared data, barriers to data sharing faced by researchers in industry include concerns about data mining, erroneous secondary analyses of data, and unwarranted litigation, as well as a desire to protect confidential commercial information. Academic partners face significant cultural barriers to sharing data and participating in longer term collaborative efforts that stem from a desire to protect intellectual autonomy and a career advancement system built on priority of publication and citation requirements. Some barriers, like the need to protect patient privacy, pre- sent challenges for both sectors. Looking ahead, there are also a number of technical challenges to be faced in analyzing potentially large and heterogeneous datasets.

This public workshop focused on strategies to facilitate sharing of clinical research data in order to advance scientific knowledge and public health. While the workshop focused on sharing of data from preplanned interventional studies of human subjects, models and projects involving sharing of other clinical data types were considered to the extent that they provided lessons learned and best practices. The workshop objectives were to examine the benefits of sharing of clinical research data from all sectors and among these sectors, including, for example: benefits to the research and development enterprise and benefits to the analysis of safety and efficacy. Sharing Clinical Research Data: Workshop Summary identifies barriers and challenges to sharing clinical research data, explores strategies to address these barriers and challenges, including identifying priority actions and "low-hanging fruit" opportunities, and discusses strategies for using these potentially large datasets to facilitate scientific and public health advances.

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