Medical research charities support the registration of clinical trials and the publication of findings.
Medical research charities aim to improve healthcare for patients. Many are able to do this because the public choose to donate their money to support research. Seventy-two percent of people tell us they want the opportunity to be involved in trials of new treatments. Patients want to take part in clinical trials so that the data generated can be used to improve treatment for others in the future as well as hoping treatments will benefit them personally. And for clinical research to benefit patients, the findings must be made available for others to learn from them.
Supporters of charities have a right to expect that their donations will fund research that will benefit patients and the public. Charities have a duty to put useful research findings into the public domain and our longstanding advice to all AMRC members is to include a requirement to publish (within a reasonable time frame) in the terms and conditions of their awards. Our members are increasingly developing research evaluation systems which will allow them to audit compliance with this.
We recognise that there are practical challenges that need to be addressed to ensure all findings, including the underlying data, are accessible. Significant progress is being made in creating an efficient system for setting up and running clinical studies in the UK, and we are keen that mechanisms to improve transparency would build on this following robust impact assessments. We are working with the rest of the medical research community to address these issues.