Patients and Families
Participating in the Registry is one critical way we can change our world." – Fred Kaplan, MD, University of Pennsylvania
The FOP Registry is Open to All Individuals With FOP
Available in seven languages: English, French, German, Italian, Portuguese, Russian and Spanish.
The FOP Registry is a global, voluntary database that collects demographic and disease information directly from individuals with FOP through a secure website.
Every person living with FOP has unique information to share. The Registry collects this information to help further research to find treatments and, one day, a cure for FOP.
The FOP Registry:
- Organizes the international FOP community for potential participation in clinical trials or other research (when treatments are available)
- Enables FOP patients worldwide to report data on the course of their disease in a single place
- Improves the collective understanding of FOP natural history and its functional, emotional, and physiological impact over time
- Advances the understanding of FOP treatment outcomes (when treatments are available)
It’s easy to contribute to FOP research:
1. Visit fopregistry.org and select “Join” to register and complete your Enrollment Survey. This important step takes 1 to 2 hours because the Enrollment Survey requests the most historical information about your FOP. You don’t have to complete this step all at once. You can start entering data, save it, and come back and finish it at your convenience. You will receive reminder emails to encourage you to complete your Enrollment Survey. You only have to do this step one time.
2. After completing your Enrollment Survey, you will receive a reminder email every six months from [email protected] asking you to complete a follow-up survey to update the Registry on any new information about your FOP. This information is important since it allows researchers to understand how FOP changes over time. Depending on how much new information you have to report, follow-up surveys take approximately 15 to 30 minutes.
You may complete the surveys yourself, or they can be completed by a parent, relative or caregiver on your behalf—whatever is most convenient for you.
For general questions about the FOP Registry, email [email protected].
If you already registered with the FOP Registry and have technical questions, including password resets, please contact:
Phone: +1 866 761 0145 (answered 24 hours a day, English only)
Email: [email protected]
Non-English speaking participants can send an inquiry by email that will be responded to in their native language.
Educational and Training Videos
What is the FOP Registry?
Betsy Bogard, IFOPA's Research Committee Chair, gives an overview and explains the significance of participation.
Details about the participant dashboard and step-by-step instructions on how to update your profile.
How to Complete a Survey
Neal Mantick, FOP Registry Study Manager, goes over survey features and tips on how to complete a survey.
- FOP Registry, Ability Toolbox and L.I.F.E. Awards Training for FOP Italia Family Meeting
FOP Registry Advisory Boards
Learn more about our advisory boards, who provide important input to the development of the patient and medical portals and their ongoing user adoption and enhancements.