- perspectives on the challenges and opportunities in clinical trial data sharing, based on an online survey of 174 people working in the clinical trials community, and a workshop.
Who this is for
- anyone involved in running clinical trials
- anyone who uses secondary trial data
- policy makers
- Guidance and support: researchers need better guidance and support to share data, including training on how to de-identify data.
- Standards: the research community needs to agree on universal standards, including data and meta-data standards, and acceptable levels of re-identification risk.
- Cost: funders should cover the costs of sharing data, including data preparation and use of access committees, catalogues and repositories. It should be clear how researchers can ask for these costs.
- Recognition and incentives: funders should recognise data sharing more explicitly to incentivise researchers, and demonstrate that they value data as a research output.
- Principles and policies: we're committed to the FAIR principles and are signatories of the San Francisco Declaration on Research Assessment (DORA). We’ll continue to reflect this commitment in our funding policies.