The FOP Connection Registry is a global registry available to FOP patients and their physicians worldwide. It was established to help accelerate research on FOP, enable clinical trials, and improve the understanding of this devastating disease.
The FOP Connection Registry collects clinical and quality-of-life information about individuals living with FOP. There are two parts to the Registry: the Patient Portal, where patients can share their own experience with FOP, and the Medical Portal, where doctors can enter data about FOP patients under their care.
The goals of the FOP Connection Registry are:
- to organize the global FOP community for potential participation in clinical trials or other research studies;
- to enable FOP patients worldwide to report information on their own disease state in a shared forum, ultimately empowering both individual patients and the community as a whole;
- to improve the collective understanding of FOP natural history and its functional, emotional, and psychological impact on patients over time; and
- when treatments are available, to advance the understanding of FOP treatment outcomes.
The FOP Connection Registry is available to all FOP patients and clinicians worldwide. The Registry is sponsored by the IFOPA, but IFOPA membership is not required to participate.
More information is available at www.ifopa.org/patient_registry.