Patient Registry

"Participating in the Registry is one critical way we can change our world."
--Fred Kaplan, MD, University of Pennsylvania

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The FOP Registry is open to all individuals with FOP.

The FOP 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.

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 The goals of the FOP Registry are to:FOP_Registry_6_Languages.png

  • Improve the quality and quantity of data collected about FOP through a patient-centered approach in order to contribute to better FOP treatment guidelines and new FOP treatments
  • Organize the international FOP community for potential participation in clinical trials or other research studies
  • Empower FOP patients by giving them the opportunity to become more involved in the management of their own disease and contribute information that will help improve care and treatment
  • Improve the collective understanding of FOP natural history and its functional, emotional, and physiological impact over time

 If you are an individual living with FOP, we invite you to participate in the Registry. Register today!

The Registry is a large and important project. If you have questions that aren't addressed by the information listed below, please contact us at registry@fopconnection.org.

Learn more about our advisory boards, who provide important input to development of the patient and medical portals and their ongoing user adoption and enhancements. 

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.
  • How to Register
    Neal Mantick, FOP Connection Registry Study Manager, shows you how easy it is to register.
  • Registry Dashboard
    Details about the participant dashboard and step-by-step instructions on how to update your profile.
  • How to Complete a Survey 
    Neal Mantick, FOP Connection Registry Study Manager, goes over survey features and tips on how to complete a survey.

Registry News

FOP Connection Registry First Annual Report

Celebrating One Year of Making a Difference

 

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