Thank you very much for attending the SCOUT consensus meeting on October 16th. FSR values the feedback and thoughtfulness you brought to the meeting. While we understand some of the frustration that might have come from the end of the meeting, we wanted to let you know that FSR is taking the results of the Endpoints consensus meeting, as well as the results from the patients polls, and are actively working on ways which patients can be heard and ensure their needs met in research.
One of the steps that FSR has taken to include patient representation in research is the creation of the Patient Advisory Committee. This committee will have an active role in multiple research initiatives, as well as addressing more of patient’s unmet needs moving forward. We have begun including more patients in grant steering committees and have worked closely with patients on focus groups to include more of the patient voice. We also want to assure patients, when research trials are being planned, that FSR advocates for patient inclusion early in the process to address patient concerns and safety.
If you’d like to hear more about FSR’s research initiatives through FSR’s newsletter or would like to receive email’s from FSR about how we are utilizing these research endpoints, please provide your name and email below.
Thank you again.