FOP Registry - Dec 2019 New

FOP Registry

Your Contribution Makes a Difference

The FOP Registry is the largest and most detailed collection of clinical and medical information about FOP and those who are living with the disease – and it’s built by people like you.

The FOP Registry collects information on how FOP affects people for an important purpose: to help clinicians and researchers better understand FOP in order to improve clinical care and speed the development and availability of disease-changing treatments, and one day, a cure.

It Takes All of Us

The best part about this database is that it's growing every day. That's because people like you from around the world, and their FOP physicians, are contributing to it.

Our Sponsors

We are grateful for the support of our sponsors: Blueprint Medicines, Clementia, an Ipsen Company, and Regeneron Pharmaceuticals.

Our Advisory Boards

Thank you to our medical and participant advisors for you contributions to the advancement of FOP research as we work towards a cure. Learn more.

What We've Learned from People in the FOP Registry

Here's just a small sample of the information uncovered that was previously not well-understood by doctors:

45% of patients
in the FOP Registry
report symptoms affecting their ears
34% of patients
in the FOP Registry
report skin problems
28% of patients in
the FOP Registry
report problems with sleeping, breathing, and stomach/digestion

Start Contributing to the FOP Registry Today

It's easy to get started. Just click below and you'll be taken to the FOP Registry website, where you can enroll.


Who Can Participate?

The FOP Registry is open to anyone with FOP. The information can either be provided by the person living with FOP or their caregiver - someone who can provide detailed information about symptoms, flares and doctor visits.

You enter this information on a dedicated website. It's secure and simple, and only anonymous information (without your name or contact information) is ever shared with researchers.

Ready to Get Started?

Start by going to the FOP Registry website at and click the Join Now link.

  • You'll be asked to gather some information and complete the enrollment survey.
  • Be sure to give yourself 30-60 minutes for this first step.
  • After completing the Enrollment Survey, you'll be sent a reminder every 6 months to sign back in and fill out a new Follow-Up Survey.
  • Follow-Up Surveys take less time to complete than the enrollment survey.
Largest Database

Your Participation Matters

The FOP Registry is the largest database on FOP in the world— because of people like you who take part and contribute their information.

By taking part in the FOP Registry, you:

  • Help grow the knowledge about FOP
  • Contribute to helping find effective treatments and possibly a cure
  • Help doctors better understand FOP and improve patient care
  • Take part in something that directly benefits the entire FOP community

The key value of the FOP Registry is that data is collected over a long period of time. That means the information shows the way FOP affects people over time. This is critical to better understanding FOP, which helps researchers, doctors and drug developers—and ultimately, people living with the disease.

Need an extra incentive to get started or complete your next survey?

Now, any FOP Registry participant who completes an entire survey (Enrollment or Follow-Up) will receive an electronic reward card worth $25. Rewards can beused online or anywhere the Visa credit card is accepted.

We know it takes time and effort to get started and to complete the surveys every 6 months. That's why we want to say thanks with this FOP Registry Rewards Program. All you have to do is log in and start contributing information. For more information on the program, visit the Registry Rewards FAQ page.

Still Not Sure?
Here's a Resource to Help You Learn More

Learn more about the FOP Registry by taking a look at this brochure. See why joining the FOP Registry means directly contributing to an important research effort!


FAQS - Frequently Asked Questions About the FOP Registry

Find out answers to some common questions about the Registry


Contact the FOP Registry

Please contact the FOP Registry in your preferred language with any questions you may have.

+1 866 761 0145
(answered 24 hours a day. English only)

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