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Publication of results of EFPIA-PhRMA commissioned Patient Stakeholder survey

EFPIA-PhRMA share the view that we need to improve the sharing of research data while protecting and retaining the privacy of patients.

Following the recent publication of our joint “Principles for Responsible Clinical Trial Data Sharing: Our Commitment to Patients and Researchers”, which we believe are the most realistic and beneficial means of clinical trial data sharing, EFPIA-PhRMA have published the results of a survey of opinions of patient stakeholders on the European Medicines Agency (EMA) proposals for data sharing on clinical trials.

We believe it is important to engage with all stakeholders with an interest in this issue, including the patients who volunteer to participate in clinical trials and are ultimately the beneficiaries of research and development.

We hope to continue our conversation with patients and other stakeholders to examine specific concerns around the EMA transparency proposals and to ensure the best outcome for patients. It is important that this is continued to be done in a way that maintains patient independence and integrity.

The results of the online survey are available here