See what your data is teaching us

The FOP Registry is the largest and most detailed collection of clinical and medical information about FOP and those who are living with the disease—and it’s built by those living with FOP.

The FOP Registry collects information on how FOP affects people for an important purpose: to help clinicians and researchers better understand FOP in order to improve clinical care and speed the development and availability of disease-changing treatments, and one day, a cure.

The key value of the FOP Registry is that data is collected over a long period of time. That means the information shows the way FOP affects people year after year. This is critical to better understanding FOP, which helps researchers, doctors and drug developers—and ultimately, people living with the disease.

The IFOPA is pleased to share the 2020 FOP Registry Annual Report with the FOP community. 

Not enrolled in the FOP Registry? It's not too late to participate. You can sign up at fopregistry.org.

Questions about the FOP Registry? Contact Sammi Kile, FOP Registry Project Manager.