The worldwide research community has embraced the efforts of the ClinicalStudyDataRequest.com consortium (CSDR) to share patient-level data from clinical studies.
Here are some numbers to back up that claim:
- More than 500 research proposals have been submitted to CSDR since its inception in 2014.
- 40+ papers have been published using clinical research data that has been shared by CSDR member companies.
- These papers feature data collected in more than 193 studies.
- A closer look at the resulting publications reveals a diverse profile:
- Two-thirds of the researchers were based at universities, and the others were from medical institutions.
- Half of the researchers were based in the EU, a third in the US, and the rest from other parts of the globe.
The list of journals associated with these papers is also diverse. Examples include the following:
- The BMJ
- Cancer Prevention Research
- Journal of Urology
The success of CSDR demonstrates the model can and does work. Sponsors post a list of available studies, researchers prepare a formal proposal, an independent review panel reviews the proposal with respect to scientific merit, and the clinical data associated with the proposal is shared (fully de-identified, of course).
This work has enabled sponsors to meet the growing transparency demands of world-wide regulatory agencies (such as the European Medicines Agency) and world-wide scientific associations (such as the International Committee of Medical Journal Editors).
In addition to handling day-to-day research proposals, CSDR is also working to let the global research community know of its existence and the plethora of opportunities available.
Note that full data on the published work is shared!
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