The ICTRP Registry Network met in Geneva. The overall purpose of this meeting was to provide a forum for information sharing between WHO and the registry network to advance collaboration in various areas including plans for expansion of the existing registries to include results reporting and IPD sharing.
The specific objectives of the meeting were to:
1. Provide an update and share experiences from each of the registries: including scope and coverage, key achievements or results to date and plans for the future;
2. Discuss ways in which ICTRP, the registry Network and trial registration in general can be improved, e.g., how to increase compliance with trial registration, data quality issues and including results of clinical trials.
3. Provide a clear position and agree on the implementation of the new data elements on results reporting and IPD sharing.
The WHO Network of Clinical Trial Registries agrees to add results availability as a core feature of clinical trial registries
- About 50% of clinical trials remain unpublished.
- This leads to waste of clinical trial funds and research efforts, and can cause bias in evidence-based decision-making in health, which can in turn lead to use of suboptimal or even harmful drugs
- Greater transparency on availability of results will allow funders and regulators to monitor the status of results reporting.
- More complete and timely disclosure of results from trials should lead to efficiencies in use of funds for clinical trials, better use of available drugs and potentially lives saved.
The WHO International Clinical Registry Trials Platform (ICTRP) sets international standards for clinical trial registries, and supports a network of registries working to these standards. ICTRP also provides a global database with over 420,000 clinical trial registry records allowing for centralized global searches.
The ICTRP registry network met for 2 days in Geneva and discussed expanding the ICTRP trials registration dataset.
At the meeting, it was agreed to add the following to the core data elements collected by ICTRP from registries: details of the ethics committee approving each clinical trial, study completion date and results availability.
This information will improve transparency and assist efforts to monitor availability of results.