Published March 25, 2024 | Version v1
Report Open

Survey by ECRIN about national registries for observational studies and sharing of individual participant data

  • 1. ROR icon European Clinical Research Infrastructure Network
  • 2. ROR icon French Clinical Research Infrastructure Network
  • 3. German Network of Coordinating Centres for Clinical Trials (KKSN)
  • 4. Greek Clinical Research Infrastructure Network (GreCRIN)
  • 5. Health Research Board - Clinical Research Coordination Ireland (HRB CRCI)
  • 6. Italian Clinical Research Infrastructure Network (ItaCRIN)
  • 7. Portuguese Clinical Research Infrastructure Network (PtCRIN)
  • 8. ROR icon Spanish Clinical Research Network
  • 9. Swiss Clinical Trial Organisation (SCTO)


A survey within 8 European countries belonging to ECRIN (European Clinical Research Infrastructure Network) was performed to assess the status of national developments with respect to registries for observational clinical studies. Additionally, this survey was targeted at the needs and requirements for data sharing of individual participant data (IPD) from clinical trials/clinical studies. 6 out of the 8 countries included in the survey, reported about national activities with respect to registries for observational or health studies. From the survey it was concluded that a first step could be to integrate the national registries with the crMDR (clinical research Meta Data Repository) from ECRIN, covering all primary registers from WHO ICTRP (International Clinical Trials Registry Platform) plus, Pubmed and some repositories for sharing of IPD (e.g. BioLINCC - Biological Specimen and Repository Information Coordinating Center, YODA - Yale University Open Data Access) (  




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