Community Data Sharing Resources
Initiatives for sharing and using data from clinical trials and other scientific research are yielding increasing data sharing resources that are available to the scientific community. The YODA Project encourages exploration of additional data sharing resources, including:
- Alzheimer’s Disease Data Initiative: The Alzheimer’s Disease Data Initiative (ADDI) houses datasets and tools to allow for increased data sharing for Alzheimer’s disease and related dementias.
- ClinicalStudyDataRequest.com : A consortium of clinical study data providers that facilitates access to patient-level data from clinical studies. Participating study sponsors include: Astellas, Bayer, Boehringer Ingelheim, Daiichi Sankyo, Eisai, GSK, Lilly, Novartis, Roche, Sanofi, Takeda, UCB and ViiV Healthcare.
- Dryad Digital Repository : A curated resource that makes the data underlying scientific publications discoverable, freely reusable, and citable. Dryad provides a general-purpose home for a wide diversity of datatypes.
- Drugs@FDA Database: Database of materials prepared by the Food and Drug Administration, the United States’ medical product regulator, including information on clinical studies and trials that were performed to evaluate the safety and efficacy of drugs approved for use by the FDA.
- European Medicines Agency: Database of materials submitted to the European Medicines Agency, the European Union’s medical product regulator, including information on the clinical studies and trials that were performed to evaluate the safety and efficacy of drugs and medical devices that receive marketing authorization by the European Medicines Agency’s Committee for Human Medicinal Products (CHMP). As per Policy 0070 on publication of clinical data, clinical overviews, summaries, study reports, statistical methods and individual patient record information are available after log in with an European Medicines Agency account.
- Figshare : A repository where users can make all of their research outputs available in a citable, shareable and discoverable manner.
- Global Alzheimer’s Association Interactive Network (GAAIN): An online integrated research platform where investigators can search, access, and analyze data from a global network of study centers to accelerate research on the causes, prevention, and treatment of Alzheimer’s and other neurodegenerative diseases.
- Google Dataset Search (beta): A search engine from Google that helps researchers locate online data that is freely available for use.
- Health Canada: Database of materials submitted to Health Canada, Canada’s medical product regulator, including information on the clinical studies and trials that were performed to evaluate the safety and efficacy of drugs and medical devices approved for use by Health Canada.
- Infectious Diseases Data Observatory (IDDO): A scientifically independent, multi-disciplinary coalition of the global infectious disease community
- LEO Pharma: A data sharing resource of anonymised patient-level data from clinical trials sponsored by LEO Pharma.
- National Sleep Research Resource : A web-based data portal that aggregates, harmonizes, and organizes sleep and clinical data from thousands of individuals studied as part of cohort studies or clinical trials and provides the user a suite of tools to facilitate data exploration and data visualization.
- NIH Data Sharing Repositories : A listing of NIH-supported data repositories that make data accessible for reuse (e.g. BioLINCC, ClinicalTrials.gov, dbGaP, NIDDK, GenBank, etc.).
- NIH Scientific Data Sharing Website : An NIH-resource designed to help navigate NIH-wide and NIH Institute and Center-specific biomedical data repositories and data sharing policies, including links to webinars and other resources to support data preparation, management and access.
- Pfizer Trial Data and Results : A data sharing resource of Pfizer’s clinical trials.
- Premarket Approval Database: Database of materials prepared by the Food and Drug Administration, the United States’ medical product regulator, including information on clinical studies and trials that were performed to evaluate the safety and efficacy of high-risk medical devices approved for use by the FDA.
- PRO-ACT: The PRO-ACT (Pooled Resource Open-access ALS Clinical Trials) platform houses the largest ALS clinical trials dataset ever created by merging data from existing publicly- and privately-conducted ALS clinical trials to generate an invaluable resource for accelerating discovery in the field of ALS.
- Project Data Sphere : A free digital library-laboratory that provides one place where the research community can broadly share, integrate and analyze historical, patient-level data from academic and industry phase III cancer clinical trials.
- SHARE Sources : A partnership between the Association of Research Libraries and the Center for Open Science to develop free, open data by gathering, cleaning, linking, and enhancing metadata that describes research activities and outputs.
- Supporting Open Access for Researchers (SOAR) : A collaboration among members of the Duke Clinical Research Institute, academia, and private industry to open clinical research data for the benefit of the broader research community.
- Vivli : An independent general access electronic data repository and search engine through which individual participant-level data and metadata from clinical trials conducted by researchers in academic, industry, foundation, and non-profit entities can be identified, hosted, shared and analyzed.
- Zenodo : A research data repository of multi-disciplinary data, software, conference materials, and educational and informational content. Access to Zenodo’s content is open to all, for non-military purposes only.
Are you aware of data sharing resources not listed above? Let us know: firstname.lastname@example.org