The page links to examples of platforms for sharing clinical, genetic, social science and public health research data - which contain details of the policies and governance processes they have in place. If you'd like to make recommendations for further platforms for data sharing platforms to highlight on this page please email bioethicsresearchreview@tghn.org or mention them in the discussion group.
The registry for research data repositories (re3data.org) contains a searchable database of over 1300 research data repositories - including platforms for sharing individual-level human health research data. Scientific Data (a Nature.com journal) maintains a list of recommended data repositories for a range of disciplines, including health sciences and social science research.
Platforms for sharing individual-level human health research data include:
'Figshare is a repository where users can make all of their research outputs available in a citable, shareable and discoverable manner.'
Clinical Study Data Request.com
Anonymised patient level data from studies funded by Astellas, Bayer, Boehringer Ingelheim, Eisai, GSK, Lilly, Novartis, Roche, Sanofi, Takeda, UCB and ViiV Healthcare.
'The Dryad Digital Repository is a curated resource that makes the data underlying scientific publications discoverable, freely reusable, and citable.'
'The Dataverse is an open source web application to share, preserve, cite, explore and analyze research data'
Human Sciences Research Council - South Africa
'A digital repository facility for the HSRC's research data in support of evidence based human and social development in South Africa and the broader region.'
'A data service dedicated to making South African and other African survey and administrative microdata available to researchers and policy analysts'.
The Interuniversity Consortium for Political and Social Research (ICPSR) - US
ICPSR advances and expands social and behavioral research, by promoting data stewardship.
NIH Supported Data Sharing Repositories - (US) (via Biosharing.org)
Links to multiple supported repositories.
National Insitutute on Drug Abuse Data Share Website - US
'The NIDA Data Share web site is an electronic environment that allows data from completed clinical trials to be distributed to investigators and the public in order to promote new research, encourage further analyses, and disseminate information to the community.'
National Intitute of Mental Health Research Domain Criteria Database - US
'RDoCdb is an informatics platform for the sharing of human subjects data related to Mental Health research.'
Yale University Open Data Project (YODA) - US
'The YODA Project has iteratively developed a model to make data available to researchers in a sustainable way, in which data sharing becomes a part of the clinical research enterprise of the future.'
A 'a comprehensive resource funded by the ESRC to support researchers, teachers and policymakers who depend on high-quality social and economic data'.
Examples of platforms sharing data from specific international collaborative initatives include:
WWARN (Worldwide Antimalarial Resistance Network)