Unlocking Real-World FOP Data

The IFOPA FOP Registry has been collecting patient-reported data since 2015. The IFOPA FOP Research Portal provides researchers access to contemporary and longitudinal patient-reported data to advance clinical research, inform development programs, and accelerate access to treatments.

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FOP Cohort Metrics

The IFOPA FOP Registry is a dynamic, growing patient registry capturing the lived experience of FOP from around the world, with patients participating from 71 countries. Register to explore deeper cohort insights through interactive, real-time data visualizations and discover what the global FOP community is telling us about the condition.

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646

Total Participants

0 - 82

Participant Age Range (Years)

72

Countries Represented

What’s in the Dataset?

The IFOPA FOP Registry captures structured, patient-reported data across key domains of disease impact, health history, and quality of life. Data is collected longitudinally to support clinical development, natural history studies, health economic studies, and more.

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Demographics & Diagnosis

Age, sex, race, FOP type, and symptom onset. These variables support population stratification, subgroup analyses, and research examining demographic factors associated with symptom burden and treatment response.

Past Medical History

Diagnostic pathway and patient-reported history of healthcare encounters including doctor visits, hospitalizations, dental care, and procedures.

FOP Symptoms & Disease Events

Tracking of flare-ups, heterotopic bone growth, baseline mobility and changes in mobility over time (i.e., mCAJIS scores), fractures, and blood clots.

Body Systems Review

A systematic check-in across organ systems noting new or ongoing symptoms and their timing.

Medication & Treatment History

Prescription and over-the-counter medications, vaccinations, and use of assistive devices or adaptions. Enables evaluation of treatment patterns, tolerability, and real-world outcomes.

Quality of Life

Standardized PROMIS Global Health and Physical Function Questionnaires measuring overall wellbeing, pain, fatigue, and physical/social functioning. Supports health outcomes research and quantifies the real-world burden of FOP.

Using the Research Portal

The IFOPA FOP Research Portal is used by academic researchers, biotechnology and pharmaceutical organizations, and patient advocacy partners to access powerful tools for data exploration and collaboration. Once registered, you’ll be able to browse available data fields, request data, and connect with us for additional research support.

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Search & Explore the Dataset

Access a data browser to view what data is available and understand how it’s collected.

Request Data Access

Submit requests for aggregate or patient-level data aligned with your research goals.

Design Embedded Studies

Propose custom surveys or studies in collaboration with the IFOPA team.

Plan for Recruitment

Identify eligible participant populations and request support to reach and engage patients.

How the IFOPA FOP Registry Works

The IFOPA FOP Registry is an international, patient-centered registry built for scientific rigor and operational transparency. Here's how we ensure data quality, privacy, and responsible use.

Ethics & Oversight

The IFOPA FOP Registry operates under IRB-approved protocols. All participants provide informed consent, and data access is reviewed by the MAB publication committee.

Data Privacy & Security

Our platform is HIPAA-compliant and has undergone rigorous privacy and security reviews. Direct identifiers are never shared with external researchers.

Participant-Centered Design

Surveys are co-developed with patients, community advisors, FOP clinicians, and pharmaceutical partners to ensure accessibility, clarity, and relevance.

Research-Ready Structure

Data are collected using validated measures, standard question formats, and structured responses wherever possible.

Data Access Process

Create an IFOPA FOP Research Portal account to explore and request data. Requests are reviewed on a rolling basis, and approved requests are shared via secure transfer.

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Frequently Asked Questions

Researchers affiliated with an academic institution, company, or other organization working on FSHD to advance disease understanding, clinical care, therapeutic development, or patient access are eligible to register. This can include decision makers in regulatory agencies or payor systems. Individuals living with FSHD and their family members or caregivers with research interests can also register.

Researchers at academic institutions can register an account for free, as can individuals living with FSHD and their family members or caregivers. Other users may require payment, depending on your affiliation. If your account requires payment, our team will reach out to you during the account approval process.

Current data visualizations include demographics, clinical and genetic diagnoses, medications, comorbidities, mobility, upper body function, and assistive devices. Visualizations can be customized with filters, which narrow your view to specific sub-populations of interest.

Researchers affiliated with an academic institution, company, or other organization can request access to aggregate and row-level data. To make a request, log into the Research Gateway and click “Start a Request”. All requests are reviewed by the Steering Committee.

Researchers at academic institutions can generally access data for free. Users affiliated with a for-profit company or other organizations will typically be charged a fee. Our team will communicate with you during the review process regarding costs. You can also reach out to us in advance of submitting a request.

Participants complete baseline surveys after enrollment, with follow-up surveys administered annually and as often as quarterly, depending on the survey. Data from the BetterLife FSHD registry is updated once a day to the Research Gateway.

Contact Us

Have questions about the FOP Research Gateway? Our team is here to help. We aim to respond to all inquiries within 2 business days.

How can we assist you today?

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