PRO Questionnaire Captures FOP Symptoms to Advance Research

In September, the IFOPA shared the exciting news that we were launching a study to develop FOP-PROMPT, a PRO (patient-reported outcomes) questionnaire that captures the symptoms most important to people living with FOP. This study will test and further develop the FOP-PROMPT questionnaire, which will help researchers and clinical trial sponsors studying new treatments for FOP.

The first study participants began testing FOP-PROMPT on October 7. The study takes place over 29-days; each day participants complete a short questionnaire about FOP and any symptoms they are experiencing. If there are no symptoms, participants report that as well.

Within just a few days of announcing the study, over 40 FOP participants (8 years and older) signed up. “We are very grateful to the FOP community for their active participation in this important research endeavor,” shared Sammi Kile, IFOPA Registry Project Manager.

The IFOPA anticipates the study will conclude the week of November 18, 2020. Once our FOP-PROMPT PRO Tool is ready, the IFOPA will translate the questionnaire into multiple languages and will have the tool available to clinical trial sponsors. The FOP-PROMPT PRO Tool will also be incorporated into the FOP Registry. 

We look forward to sharing more announcements about the FOP-PROMPT study as they are available. If you would like more information about the FOP Registry, visit ifopa.org/fopregistry.