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An international, observational registry by and for the FOP community to help advance the development of treatments.

Click here to learn more, or visit the IFOPA website.

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About FOP Connection Registry

The FOP Connection Registry is a global registry available to FOP patients and their physicians worldwide. It was established to help accelerate research on FOP, enable clinical trials, and improve the understanding of this devastating disease.

The FOP Connection Registry collects clinical and quality-of-life information about individuals living with FOP. There are two parts to the Registry: the Patient Portal, where patients can share their own experience with FOP, and the Medical Portal, where doctors can enter data about FOP patients under their care.

The goals of the FOP Connection Registry are:

  • to organize the global FOP community for potential participation in clinical trials or other research studies;
  • to enable FOP patients worldwide to report information on their own disease state in a shared forum, ultimately empowering both individual patients and the community as a whole;
  • to improve the collective understanding of FOP natural history and its functional, emotional, and psychological impact on patients over time; and
  • when treatments are available, to advance the understanding of FOP treatment outcomes.

 

The FOP Connection Registry is available to all FOP patients and clinicians worldwide. The Registry is sponsored by the IFOPA, but IFOPA membership is not required to participate.

 

More information is available at www.ifopa.org/patient_registry.

About FOP

Fibrodysplasia ossificans progressiva (FOP) is an extremely rare and severely disabling genetic disease in which soft tissue transforms permanently into bone, ultimately imprisoning those afflicted in a second skeleton of bone. Bridges of extra bone develop across the joints, progressively restricting movement and leading to eventual immobility. The disease is caused by a point mutation in the gene encoding the ALK2 receptor, rendering it overactive. Researchers estimate the disease incidence at 1 in 2 million, suggesting that there are approximately 3,000 individuals living with FOP worldwide. There are approximately 800 cases known to the FOP community leadership today. No treatment currently exists for FOP, but multiple academic and corporate entities are actively engaged in the pursuit of a safe and effective therapy for FOP.

About the IFOPA

Founded by Jeannie Peeper in 1988 to end the isolation formerly associated with FOP, the IFOPA is a registered 501(c)(3) organization that has evolved into the world's leading non-profit resource for FOP, and today has members from over 50 countries. The IFOPA's programs and services are focused in four primary areas, including research, education, support programs for FOP members/families, and global advocacy. The organization celebrated its 25th anniversary in 2013, and has raised more than $16 million in resources for its objectives. Find out more at www.ifopa.org.