Clinical Trial Disclosure & Data Transparency Conference

Patient access to information on clinical trials is essential so that they can be informed about the outcome of trials they have participated in as well as any options for treatment emerging from research conducted on their condition. It is important that the outcomes of research are accessible for patients in terms of the source of information and language used and that patients are confident their personal data is adequately protected.

In this session a patient representative will explain the importance of access to good lay language summaries and the need to include balanced information, including quality of life and patient reported outcome data. The importance of patient engagement and input for EMA will be presented and discussed by a member of the patient and consumer working party (PCWP).