Dear FOP Families and Friends of the FOP Registry,
It is with tremendous gratitude for your many contributions to the FOP Registry that we present the 2023 FOP Registry Annual Report.
2023
FOP Registry Annual Report
2023 Data Recap
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.
Scroll or click to continue
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.
Our success in compiling this valuable database is a tribute to the time and effort every participant takes to record their experiences.
You may notice that this year’s annual report looks a bit different from previous years. We are pleased to introduce our new, interactive format, designed to give users a more engaging experience. We hope you like it, and we hope it makes exploring the Registry data more inviting than ever.
Thank you for your contributions to the FOP Registry. Together, we can truly make a difference in the lives of people living with FOP.
With great appreciation,
Michelle Davis
Executive Director
IFOPA
FOP Demographics
Who is participating in the Registry?
328
people are enrolled
29
enrolled in 2023
Did You Know?
When you see "n=" and then a number, it's referring to
the number of people who responded to that question.
FOP Demographics
Who is participating in the Registry?
69
countries are
represented
Top Five Countries
United States
95 (29.0%)
Brazil
32 (9.8%)
United Kingdom
18 (5.5%)
France
17 (5.2%)
Italy
14 (4.3%)
- Mexico 11
- Spain 11
- Canada 9
- China 7
- Colombia 7
- Germany 7
- India 7
- Poland 7
- Australia 6
- Russia 6
Countries with less than 5 participants:
Albania, Argentina, Austria, Bahrain, Bangladesh, Belarus, Belgium, Benin, Bolivia, Bulgaria, Cambodia, Chile, Denmark, Ecuador, Estonia, Ethiopia, Finland, Ghana, Greece, Hungary, Indonesia, Iran, Jordan, Kenya, Latvia, Macedonia, Malaysia, Malta, Morocco, Netherlands, New Zealand, Nigeria, Not Specified, Pakistan, Panama, Paraguay, Peru, Philippines, Portugal, Puerto Rico, Romania, Saudi Arabia, Serbia, South Africa, Sweden, Switzerland, Thailand, Turkey, Uganda, United Arab Emirates, Uruguay, Venezuela, Vietnam
FOP Data
Extra Bone Growth
N=328
Top 5 most common locations
for extra bone growth
neck61.6%
Shoulder63.7%
Upper Back65.2%
Lower Back61.3%
Hip46.0%
(All FOP Participants Enrolled as of
December 31, 2023)
FOP Data
First Visit at
Onset of FOP Symptoms
N=302
When patients and caregivers first notice symptoms of FOP, the majority visit their regular doctor, usually a pediatrician or general practitioner/internist.
FOP Data
Correct
Diagnosis
N=304
An official diagnosis of FOP is usually made by a specialist, most commonly a geneticist.
FOP Data
Head and Mouth
Jaw Status
62.0%
(168 of 271 people)
had extra bone growth
17.7%
(55 of 310 people)
experienced joint lock-up under the jaw
8.4%
(20 of 239 people)
experienced limited movement under the jaw without extra bone growth
FOP Data
Head and Mouth
Mouth Symptoms
n=37 experienced these mouth symptoms:
78.4%
Reduction in mouth opening
56.8%
Problems with chewing
54.1%
Pain in the teeth
54.1%
Problems with brushing or flossing teeth
43.2%
Problems with swallowing
40.5%
Pain in the gums
37.8%
Problems with speaking
10.8%
Changes in saliva odor during flare-ups
FOP Data
Head and Mouth
Dental Care
n=101
sought dental care
in the 2023 calendar year
in the 2023 calendar year
of participants said they
experienced flare-ups or
decreases in jaw mobility
following a dental procedure
Reasons
for seeking
dental care:
for seeking
dental care:
2023 Registry Accomplishments
Developed the Sponsor Dashboard
Developed the 2024 Patient Insights Survey
Translated the FOP Registry video for patients to better understand Registry participation
Contributed Registry data towards 2 new observational research projects
Received 36-month Whole Body CT images from Ipsen's Natural History Study
Number of Data Requests in 2023 = 6
2023
What’s coming next?
Launching the Sponsor Dashboard
Launching the 2024 Patient Insights Survey to Registry participants for new insights into pain, puberty, impact of misdiagnosis, and more
Updating the FOP Registry Case Report Forms (the questions we ask patients in the FOP Registry) to align with emerging research and improve participant experience
Upgrading the Registry platform to make account creation and enrollment easier
2024
Publications and Presentations Utilizing Registry data
Sort by Year:
2022
2021
2020
2019
2018
An ACVR1 Activating Mutation Causes Neuropathic Pain and Sensory Neuron Hyperexcitability in Humans
Read in The Journal of the International Association for the Study of Pain 2022
Caregiver Support in Fibrodysplasia Ossificans Progressiva
Prevalence of Fibrodysplasia Ossificans Progressiva (FOP) in the United States: Estimate from Three Treatment Centers and a Patient Organization
Social and Clinical Impact of COVID-19 on Patients with Fibrodysplasia Ossificans Progressiva
Read in NIH National Library of Medicine National Center for Biotechnology Information Preprint 2021
The Diagnostic Journey in Fibrodysplasia Ossificans Progressiva: Insights from the FOP Registry
Read in ASBMR 2020
Self-reported baseline phenotypes from the International Fibrodysplasia Ossificans Progressiva (FOP) Association Global Registry
Read in Bone 2020
Longitudinal Evaluation of Pain, Flare‐Up, and Emotional Health in Fibrodysplasia Ossificans Progressiva: Analyses of the International FOP Registry
Read in JBMR Plus 2019
The FOP Registry: A Global Observational Study of Fibrodysplasia Ossificans Progressiva
Read in Global Genes 2019
ACVR1-Induced Sensory Neuron Dysfunction in Fibrodysplasia Ossificans Progressiva
Read in ASBMR 2019
The FOP Connection Registry: Design of an international patient-sponsored registry for Fibrodysplasia Ossificans Progressiva
Read in Bone 2018
Thank You to Our 2023 Registry Sponsors
Visionary Partner
Incyte Pharmaceuticals
Leadership Partner
Regeneron Pharmaceuticals
Collaborating Partners
BioCryst Pharmaceuticals Ipsen
Supporter
Keros Therapeutics
The FOP Registry would not be possible without our Medical Advisory Board members, Participant Advisory Board members, and Registry participants.
Special Thanks to:
Radiant Hope Foundation for the initial vision and funding support of the FOP Registry.
Questions?
Don't hesitate to reach out by email: [email protected]
www.FOPRegistry.org
©2024 IFOPA. All rights reserved.