Skip to main content

Advertisement

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 Drum, https://conservancy.umn.edu/handle/11299/166578 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 EASY, https://easy.dans.knaw.nl/ui/home 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 ICPSR, https://www.icpsr.umich.edu/icpsrweb/ICPSR/index.jsp 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 UMIN, http://www.umin.ac.jp/icdr/ 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 EBCTCG, https://www.ctsu.ox.ac.uk/research/ebctcg 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 NIDDK, https://repository.niddk.nih.gov/home/ 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)
  1. Acronyms: CERN Conseil européen pour la recherche nucléaire; DRUM Data Repository for the University of Minnesota; EASY Electronic Archiving System; EBCTCG Early Breast Cancer Trialists’ Collaborative Group; ITN Immune Tolerance Network; NDACAN National Data Archive on Child Abuse and Neglect; NDCT National Database for Clinical Trials Related to Mental Illness; NHLBI National Heart, Lung, and Blood Institute; NIDDK National Institute of Diabetes and Digestive and Kidney Diseases; NIH National Institute of Health; NIMH National Institute of Mental Health; TBI Traumatic brain injury, UMIN University Medical Information Network; WWAAR WorldWide Antimalarial Resistance Network