Frequently Asked Questions

Access is available to qualified researchers, including academic institutions, and industry sponsors.

To register, click any “Register” button on the home page. Fill in your affiliation and contact information. Depending on your affiliation, your account may require review and approval before access is granted to the Research Portal. We review and approve accounts on a rolling basis and as quickly as possible.

After registering, you will have access to a dashboard where you can filter a cohort of interest and view charts of aggregate demographic and flare-up data. You can also explore all available data variables and submit a request for aggregate or patient-level data and recruitment support.

Current data visualizations include demographics, registry utilization, age and location of first flare-up, and mCAJIS data. Visualizations can be customized with filters, which narrow your view to specific sub-populations of interest.

Yes. The Research Portal dashboard allows registered users to search and view all available variables before submitting a request. You can also access a data dictionary.

Data is provided in a standardized, de-identified format.

Typical review and approval takes 2–3 weeks. Once approved, data are generally delivered within 1–2 additional weeks, depending on complexity.

Participants complete an Enrollment Survey, with Follow-up Surveys administered every 6 months. Data from the FOP Registry is updated once a day to the Research Portal.

All data are self-reported by individuals with FOP through the FOP Registry. Surveys are designed in collaboration with patients and experts to ensure accessibility, clarity, and relevance.

Data are de-identified and stored on a secure, HIPAA-compliant platform. Only select IFOPA staff have access to personally identifiable information. Direct identifiers are never shared with external researchers.

The FOP Registry is governed under an IRB-approved protocol. Data access and use are reviewed by the Publications Committee of the Registry Medical Advisory Board.

Yes. The IFOPA team is open to collaborations and sub-studies to add new modules or questions. Please contact us to discuss your study and the solutions IFOPA may be able to offer. You can use our Contact Us form or email us directly at [email protected].

Yes. Registered users can request recruitment support, including targeted outreach to eligible participants, and sharing of your study details. To make a request, log into the Research Portal and click “Start a Request”.

You can use our Contact Us form or email us directly at [email protected].

You can use our Contact Us form or email us directly at [email protected].