A New Chapter for the FOP Registry

In 2025, the FOP Registry marked an extraordinary milestone: ten years of community-powered data. Since its launch in 2015, more than 335 individuals with FOP around the world—some newly diagnosed babies, others longtime contributors—have helped build one of the most robust longitudinal datasets in rare bone disorders.

Now, the FOP Registry is entering its next chapter.

At the beginning of May, we are transitioning the FOP Registry to a new patient experience and real-world data platform with a new partner, Lumiio AiRare. This change provides new features designed to better serve patients and families. Most importantly, all ten years of FOP Registry participants’ data are moving with us.

While our platform may change, our purpose remains the same — to securely capture patient-reported experiences over time to deepen understanding of FOP, improve clinical care, and further enable clinical trials to accelerate the development of better treatments through community-driven data.

Why are we making the switch?

Over the past decade, our existing vendor has offered significant discounts to ensure continuity and to establish the powerful tool that is the FOP Registry. However, in 2025, we were informed that they could no longer offer the discount. We remain grateful to Digital Infuzion, our current FOP Registry vendor, for paving the way and helping us make IFOPA’s Registry the largest and most comprehensive FOP research database in the world.

We also recognize this switch as an opportunity to advance the FOP Registry, as technology and patient engagement tools have evolved over the past 10 years. This opportunity of moving to Lumiio AiRare allows us to:

Protect and retain 10 years of valuable FOP data
Provide a more user-friendly, patient-centered platform
Expand features that directly benefit families
Strengthen how data supports research and clinical trials

I’m a part of the FOP Registry — what will I need to do?

When the platform launches, around the beginning of May, you will receive an email from [email protected] prompting you to:

Log in to fopregistry.org—You will use the same email address you always have, and the system then verifies your account.
Review and sign an updated Informed Consent form that outlines changes to the FOP Registry platform and reflects the change in FOP Registry vendors.

After that, everything will already be in place. Remember, your survey may not be due immediately. Keep an eye out for an email notifying you of your upcoming survey, as you always have.

The FOP Registry rewards remain unchanged: participants will still receive $25 for each Enrollment Survey and $25 for each Follow-Up Survey completed every six months.*

I’m not a part of the FOP Registry, but I’d like to sign up. What does participating look like?

Wonderful! By signing up, you’re joining a global community of individuals with FOP sharing their experiences to deepen our understanding of FOP. Visit fopregistry.org to create your account and get started. The FOP Registry is available in English, French, German, Italian, Polish, Portuguese, Russian, and Spanish.

Your first Enrollment Survey will take about 45 minutes. You will then complete Follow-up Surveys every six months, which takes about 15-20 minutes. You do not need to complete your entire survey in one sitting. If you need to take a break and finish the survey later, the system saves the data you have already entered. You may also have a caregiver help you complete the surveys.

This small contribution, multiplied across the community and over time, has expanded our knowledge of FOP and provided important insights into the lived experience of individuals with FOP, information that has driven measurable progress in FOP research and improved physician care.

Why the FOP Registry matters

The FOP Registry is more than surveys. It captures real-world data that:

Provides a comprehensive view of the FOP journey
Helps researchers understand disease progression
Improves clinical trial design
Supports pharmaceutical partners in developing treatments
Guides best practices in clinical care
Provides information for patients to help them better understand FOP and the various aspects and impacts of the condition.

You may think you have not experienced any changes to your health in the past 6 months, but we want you to know that even reporting “no change” in your FOP Registry survey is meaningful data.

What’s new with Lumiio AiRare?

Lumiio is a hybrid patient engagement and research-grade data platform. It offers:

A simplified, patient-friendly interface
Secure, regulatory-aligned data capture
A health diary to track symptoms and experiences
A future ability to print survey responses and share those with healthcare providers
A future clinical trial finder
A future “Care Connector” that will help build a global list of where patients receive care from clinicians and dentists who are familiar with FOP
Future integration opportunities with wearable devices (like Fitbit)

Remember: FOP Registry rewards remain unchanged: participants will still receive $25 for each Enrollment Survey and $25 for each Follow-Up Survey completed every six months.