Mexico & Argentina are the First Sites to Go Live
You know the FOP Registry and how patients add their data to benefit FOP research. But did you know the IFOPA has been building a Medical Portal where physicians will add complementary data?
We are excited to announce that our first Medical Portal sites have received Ethics Committee approval to participate in the FOP Registry. Dr. Alberto Hidalgo-Bravo, at the Instituto Nacional de Rehabilitación in Mexico City, Mexico and Dr. Carmen De-Cunto, FOP Registry Medical Advisory Board Chair, at the Sociedad Italiana de Beneficencia in Buenos Aires, Argentina are the first FOP Registry sites approved to participate.
Although our Patient Portal has been collecting patient reported data since 2015, the addition of physician-entered, clinical data in the Medical Portal represents an important step to growing and enhancing the FOP Registry.
We are excited to receive this approval and look forward to initiating Medical Portal activities with Dr. Hidalgo-Bravo’s and Dr. De-Cunto’s sites. Approvals are in process for several additional sites around the world. The IFOPA thanks Dr. Hidalgo-Bravo and Dr. De-Cunto, as well as their clinical teams, for their participation and future contributions to our FOP Registry.
If you would like to learn more about the FOP Registry, or to sign up to participate in this important study, please visit ifopa.org/fopregistry. Patient enrollment is always open.
The IFOPA oversees the FOP Registry on behalf of the FOP community thanks to generous support from Blueprint Medicines, Ipsen and Regeneron Pharmaceuticals. Thank you to the Radiant Hope Foundation for the visionary funding that launched the FOP Registry.