"Participating in the Registry is one critical way we can change our world."
--Fred Kaplan, MD, University of Pennsylvania
The FOP Connection Registry is a global, voluntary database that will collect and report demographics, disease, and quality-of-life information directly from individuals with FOP twice a year via a secure, web-based tool. The Registry will later include a portal for FOP clinicians to access and enter data for patients under their care.
The goals of the FOP Connection Registry are to:
- Organize the international FOP community for potential participation in clinical trials or other research studies
- Empower both individual FOP patients and the community as a whole
- Improve the collective understanding of FOP natural history and its functional, emotional, and psychological impact over time, and
- Advance the understanding of FOP treatment outcomes when treatments are available.
The FOP Connection Registry is open to all individuals with FOP. The Registry surveys can be completed by the person with FOP or by a parent, guardian, or other caregiver.
Registries enable patients to become more involved in the management of their own disease and contribute information that will help improve care and treatment. By joining and putting your individual data into the FOP Connection Registry, health care professionals, clinical researchers, and drug developers can better understand the clinical characteristics and disease progression in a larger population of FOP patients. The Registry’s ultimate goal is to improve the quality and quantity of data collected about FOP through a patient-centered approach and to contribute to better FOP treatment guidelines and new FOP treatments.
If you are an individual living with FOP, we invite you to participate in the Registry. Please register today!
"Do what you can, where you are, with what you have."
– Teddy Roosevelt
To get started, all you need to do is complete a Registration Form, create a user account and password, provide Informed Consent, and begin responding to surveys. The FOP Connection Registry is for you and is free to participate.
Here are the registration steps:
- Go to www.fopconnection.org and click "Join Now".
- Complete the Registration Form and create a user name and password.
- Review the "Informed Consent" which includes detailed information about the Registry and how data will be collected and used. Provide an electronic signature by checking the box that indicates that the person with FOP (or the parent or legal guardian if a minor child) is aware of and agrees to have his/her information added to the Registry.
The Registration Form will take approximately 10 minutes to complete and will let us know who you are, where you live, and where you currently receive medical care.
After submitting your Registration Form, please allow up to 48 hours to receive an email with your registration approval and a link to the Registry surveys.
After I register, then what?
After your Registration is approved, you will receive an email with a link to an Enrollment Survey. The Enrollment Survey will take up to 45-60 minutes to complete, depending on your age and how much of your FOP history you want to share. It is the longest Survey in the Registry since it tries to capture your FOP journey from the time of your diagnosis to now.
After your Enrollment Survey, you will receive a reminder email every six months to complete a Follow-Up Survey in order to update your FOP story on a routine basis. The Follow-Up Surveys will take only 15-30 minutes to complete since you are only recording changes in your health during the prior six months.
"This is no small project. That's why we are doing it."
-Grounded Visionaries, Harvard Graduate School of Design
The Registry is a large and important project. Here are some ways you can get more information about it. If you have questions that aren't addressed by the information listed below, please contact us at firstname.lastname@example.org.
Educational and Training Videos
Betsy Bogard, IFOPA Director of Global Research Development, gives an overview and explains the significance of participation
How to Register
Neal Mantick, Study Manager for the FOP Connection Registry, gives step-by-step instructions.
Details about the participant dashboard and step-by-step instructions on how to update your profile.
How to Complete a Survey
Neal Mantick, Study Manager for the FOP Connection Registry, goes over survey features and tips on how to complete a survey.