FOP Registry is an independently operated clinical database run by the IFOPA that collects comprehensive medical and clinical information about fibrodysplasia ossificans progressiva (FOP). Designed for patients, treating physicians and researchers, the app centralizes longitudinal case data submitted every six months to improve understanding of disease patterns, support clinical decision-making and help accelerate development of disease‑modifying therapies. By contributing personal or patient information, users help build a large, de‑identified dataset researchers can analyze and clinicians can reference, and FOP Registry also provides a platform for practitioners to share findings and raise awareness about this rare condition.

Key Features

The app gathers a broad and detailed collection of clinical and medical information on FOP. It allows people living with FOP to submit clinical updates every six months and enables physicians to enter patient clinical information to support research and care. Aggregated longitudinal case data inform research efforts and may help accelerate therapy development. The platform also supports publication of practitioner findings and helps elevate clinical and public awareness of the disorder.

Advantages

The registry supports researchers and clinicians with a centralized dataset to improve disease understanding. Increasing the volume and consistency of data contributes to efforts to develop disease‑modifying therapies. The participation model is inclusive, allowing people living with FOP and treating physicians to contribute, and submitted data are de‑identified to protect privacy.

Disadvantages

Participation requires users and clinicians to submit data regularly, typically every six months, so ongoing commitment is needed. The registry's usefulness depends on the number and consistency of contributions from the community and clinical partners. The platform focuses exclusively on FOP and does not cover other conditions or broader musculoskeletal datasets.

Development Team

The FOP Registry is independently operated by the IFOPA, an organization dedicated to supporting people affected by fibrodysplasia ossificans progressiva and advancing research through consistent data collection and community engagement.