Fop Registry Reports

Leo Migdal

-Dec 5, 2025, 2:32 PM

New Format! This year’s FOP Registry Annual Report is interactive to bring you even more dynamic data about FOP. The FOP Registry is the largest and most detailed database of medical information about FOP and those who are living with the condition. The best part about the FOP Registry is that it is growing every day. That’s because people from around the world living with FOP, and their doctors, are contributing to it. And that means that the understanding of this very rare condition is growing all the time.

The FOP Registry was started in 2015 and is open to anyone living with FOP. © 2024 FOP Registry. All Rights Reserved. The FOP Registry is a global, voluntary database that collects demographic and disease information directly from individuals with FOP through a secure website. It is one of the most important research projects into Fibrodysplasia Ossificans Progressiva, and is open to all individuals with FOP. It is available in seven languages: English, French, German, Italian, Portuguese, Russian and Spanish.

Every person living with FOP has unique and important information to contribute, and FOP Australia encourage everyone with FOP to participate. What has been learnt from the registry so far? Check out the registry annual reports on the IFOPA website to see some of the information that is already emerging to change the world’s understanding of this disease. There will be ongoing reports and publications of the data gained from the FOP Registry. How people with FOP can contribute to the FOP registry: People with FOP may complete the surveys directly, or they can be completed by a parent, relative or caregiver on your behalf (whatever is most convenient for you!).

A global, patient-reported registry has been established to characterize the course of disease and track clinical outcomes in patients with fibrodysplasia ossificans progressiva (FOP), an ultra-rare genetic condition of progressive heterotopic ossification (HO) that... Here, we present baseline phenotypes on 299 patients (median age 21 years; range 0.1 to 78 years) from 54 countries based on aggregate data from the International FOP Association (IFOPA) Global Registry (the "FOP... The mean current age of the patients is 23.7 years (range, 0.1 to 78 years). Baseline characteristics are presented for FOP diagnosis, HO, flare-ups and precedent events, system-based prevalent symptomatology, encounters with medical and dental care providers, Patient Reported Outcomes Measurement Information System (PROMIS) Global Health Scale scores, physical... Correlations of PROMIS Global Health scores with HO burden and physical function are calculated. Associations of joint mobility with PROMIS Global Health scores, physical function, and use of aids, assistive devices, and adaptations are summarized.

Overall, the FOP Registry database contains a broad sample of the global FOP patient population, providing a useful tool for expanding knowledge of FOP, designing clinical trials and facilitating evidence-based decisions about the optimal... Keywords: Fibrodysplasia ossificans progressiva; Heterotopic ossification; Patient registry; Physical functioning; Quality of life. Copyright © 2020 Elsevier Inc. All rights reserved. The FOP Registry is available to individuals with FOP and their doctors to share information about their medical journeys. No matter where they live, everyone with FOP can participate.

The Registry is available in 9 languages - English, French, German, Italian, Korean, Polish, Portuguese, Russian and Spanish. Information from the FOP Registry is used to increase our understanding of the condition, improve clinical care, and speed the development of treatments. Here's a recap of what we learned in 2023. It is with tremendous gratitude for your many contributions to the FOP Registry that we present the 2023 FOP Registry Annual Report. The FOP Registry is the largest database on FOP in the world. Our 328 participants (and counting!) provide valuable insights into their experiences living with the condition, including diagnoses, symptoms, flares, and doctor visits.

These experiences, recorded over the last 8 years, help researchers, doctors, and drug developers better understand the condition. This in turn can lead to better patient care, as well as potential new treatments and even a cure. Every year IFOPA, or the International Fibrodysplasia Ossificans Progressiva Association, publishes statistics about the rare genetic disease FOP. Families and care groups for FOP patients rely on IFOPA for advocacy, education and support and also fundraise for research to find a cure. Since 2019, Shields SGF has been tasked with creating IFOPA's annual report, which traditionally had been a PDF in a long scroll infographic format. This offered some opportunities for creative data display, but we knew we could create something more engaging than a static graphic.

In 2024, we pitched the idea of a interactive annual report instead. Shifting the report onto the web allows users to engage more deeply with the data and analyze the statistics more closely. Now laid out in a multi-page experience, the information has room to breathe. Users can share the link to the report directly, as well as use it as a resource to find more information, including research publications that have the latest updates about FOP. With Shields SGF's help, IFOPA has found a new way to deliver vitally important research to their audience and evolve their content to be feel fresh and inventive. We also helped set up a FOP Registry Reports landing page for future and past reports, so that these pieces (no matter what form they take) will have a dedicated place to live on...

Now FOP patients and their families can see a clear story in the data from multiple years of IFOPA reporting! 26 Howland Street Plymouth, MA 02360 E: contact@shieldssgf.com T: +1 508 732 9903

Fop Registry Reports

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