Clinical trial registries are established tools widely used in clinical research. Registration rates of clinical trials have increased, however, there remains a substantial underreporting of observational studies. A survey across eight European countries belonging to the European Clinical Research Infrastructure Network (ECRIN) was conducted to assess the status of national developments with respect to registries for observational clinical trials. The SCTO actively contributed to this survey, which was additionally targeted at the needs and requirements for sharing of individual participant data (IPD) from clinical trials/clinical studies.
Six out of the eight countries included in the survey reported on national registries activities for observational or health studies. The authors of the survey suggested that a first step of improvement could be to integrate the national registries with ECRIN’s clinical research Meta Data Repository (crMDR), covering all primary registries of the World Health Organization’s International Clinical Trials Registry Platform (ICTRP) plus ClinicalTrials.gov, Pubmed and some repositories for sharing of IPD.
Read the complete study Survey by ECRIN about national registries for observational studies and sharing of individual participant data, Christian Ohmann et al., Zenodo, published on 25 March 2024.