Table 1 Main characteristics of the included repositories
From: Evaluation of repositories for sharing individual-participant data from clinical studies
Name, URL | Scientific scope | Source scope | Host organisation | Main funding | Who can upload data? | |
|---|---|---|---|---|---|---|
Generic | ||||||
1 | B2Share, https://b2share.eudat.eu/ | General scientific | Continental (Europe) | EUDAT centres in various EU countries (Germany, Finland) | Public/Academia (EU Commission and other partners) | Anyone |
2 | General scientific | Institutional | University of Minnesota | Public/Academia (University of Minnesota) | Researcher from University of Minnesota | |
3 | Dryad, https://datadryad.org | General scientific | Global | University of North Carolina, British Library and Oxford University | Not-for-profit membership organisation | Any author of published article |
4 | General scientific | National (the Netherlands) | Data Archiving and Networked Services | Public/Academia (Royal Netherlands Academy of Arts, Sciences/Organisation for Scientific Research) | Anyone | |
5 | Edinburgh DataShare, https://datashare.is.ed.ac.uk/ | General scientific | Institutional | University of Edinburgh | Public/Academia (University of Edinburgh) | Researcher from University of Edinburgh |
6 | Figshare, https://figshare.com/ | General scientific | Global | Figshare (via Amazon web services) | Commercial/ Public/Academia | Anyone from user organisations |
7 | Social and health sciences | Global | Institute for Social Research (University of Michigan) | Public/Academia (university consortium) | Anyone | |
8 | Open Science Framework, https://osf.io/ | General scientific | Global | Center for Open Science, Virginia (USA) | Private Foundation (Laura and John Arnold Foundation) | Anyone |
9 | Swedish National Data Service, https://snd.gu.se/en | Social and health sciences | National (Sweden) | University of Gothenburg | Public/Academia (university consortium) | Anyone (mainly Swedish researchers) |
10 | Clinical study | National (Japan) | University Hospital Medical Information Network – University of Tokyo Hospital | Public/Academia (trial registry) | Investigators of trials registered | |
11 | Vivli, https://vivli.org/ | Clinical study | Global | Center for global Clinical Research Data, Harvard | Non-profit organisation | Anyone |
12 | Zenodo, https://zenodo.org | General scientific | Global | CERN (Geneva) | Public/Academia (EU Commission and other partners) | Anyone |
Disease specific | ||||||
13 | CancerData.Org, https://www.cancerdata.org/ | Cancer | National (The Netherlands) | Maastro Clinic (The Netherlands) | Health care corporate | Not clear |
14 | Project Datasphere, https://www.projectdatasphere.org/projectdatasphere/html/home | Cancer | Global | CEO Roundtable on Cancer, Inc. (USA) | Pharma consortium | Researchers/pharma in the field of cancer |
15 | Breast cancer | Global | Oxford University (UK) | Public/Academia (UK Medical Research Council and Cancer Research) | Early Breast Cancer Trialists’ Collaborative Group | |
16 | FreeBird, https://ctu-app.lshtm.ac.uk/freebird/ | Injury and emergency medicine | Global | London School of Hygiene & Tropical Medicine (UK) | Public/Academia | Researchers in the field of emergency medicine |
17 | ITN Trialshare, https://www.immunetolerance.org/researchers/trialshare | Allergy, Asthma, Autoimmune disease, Transplantation, | National (USA) – collaborative network | National Institute of Allergy and Infectious Diseases, NIH (USA) | Public/Academia (NIH) | Researchers of ITN promoted trial |
18 | Melanoma MMP, http://www.mmmp.org/MMMP/public/trials/listTrials.mmmp | Melanoma | Global | Not clear | Public/Academia (non-profit association) | Apparently anyone (melanoma) |
19 | NDACAN, www.ndacan.cornell.edu/ | Child abuse and neglected | National (USA) | National Data Archive on Child Abuse and Neglect (Cornell University) | Public/Academia (Children’s Bureau and Department of Health and Human Services) | Anyone (child abuse research) |
20 | NDCT NIMH, https://data-archive.nimh.nih.gov/ndct | Mental health | National (USA) | National Institute of Mental Health | Public/Academia (NIH) | Anyone (mental health-related clinical trial) |
21 | Diabetes, digestive, and kidney diseases | National (USA) | National Institute of Diabetes and Digestive and Kidney Diseases | Public/Academia (NIH) | Researchers of NIDDK-funded studies | |
22 | NIH BioLINCC, https://biolincc.nhlbi.nih.gov/home/ | Heart, lung, blood diseases | National (USA) | National Heart, Lung, and Blood Institute | Public/Academia (NIH) | Researchers of NHLBI funded-project |
23 | ProAct, https://nctu.partners.org/ProACT | Amyotrophic lateral sclerosis | Global | Prize4Life Israel & Massachusetts General Hospital | Not-for-profit/Pharma | Data donated by project partners |
24 | TBI-IMPACT, http://www.tbi-impact.org/ | Traumatic brain injury | Global | Antwerp, Rotterdam and Edinburgh | Public/Academia | Not clear |
25 | WWARN, www.wwarn.org/ | Malaria and other infectious diseases | Global | University of Oxford | Public/Charity | Anyone (malaria) |