FOP Registry HCP

About the FOP Registry

The FOP Registry is a rare disease registry that is operated by the IFOPA, and dedicated to accelerating FOP research, enabling clinical trials in FOP and improving the understanding of FOP natural history.

Since its inception in 2015, patients and their caregivers have provided detailed information to the FOP Registry about their disease, including symptoms, flares and doctor visits. Now the FOP Registry is also open to healthcare professionals who submit patient information via a secure, web-based medical portal.

Why Participate in the FOP Registry

Registries for rare diseases such as FOP can play an important role in understanding the course of the disease, as well as providing information necessary for clinical trial design.1

Contributing data on your patients with FOP directly improves the knowledge base on this rare disease, enabling you and other healthcare professionals to submit data requests to the FOP Registry for use in publications or other research.

Advisory Boards

The FOP Registry Advisory Boards provide important input for the ongoing development and oversight of the patient and medical FOP Registry portals, as well as assistance with publications including data analysis, manuscript development, submission and review. This group of FOP experts provides critical insights and contributions to the advancement of FOP research.

Medical Advisory Board
Chair
Carmen de Cunto MD
Hospital Italiano de Buenos Aires
Argentina
Vice Chair
Genevieve Baujat MD
Hospital Necker-Enfants, Malades
France
Academic Medical Advisors
Mona Al Muakaddam MD, MS
University of Pennsylvania
United States
Patricia Delai MD
Hospital Israelita Albert Einstein
Instituto de Ensino e Pesquisa
Brazil
Maja di Rocco MD
Gaslini Institute
Italy
Marelise Eekhoff MD, Phd
VU Medical Center, Amsterdam
Netherlands
Zvi Grunwald MD
Thomas Jefferson University Hospital
United States
Nobuhiko Haga MD
University of Tokyo
Japan
Edward Hsiao MD, PhD
UCSF School of Medicine
United States
Frederick Kaplan MD
University of Pennsylvania
United States
Richard Keen MD, BS, BSc, PhD, MRCP
Royal National Orthopaedic Hospital
United Kingdom
Rolf Morhart MD
Klinikum Garmisch-Partenkirchen
Germany
Robert Pignolo MD, PhD
Mayo Clinic
United States
Christiaan Scott MBChB, FCPaed
Red Cross Children's Hospital
South Africa
Keqin Zhang MD, PhD
Shanghai Tongji University
China
Pharmaceutical Industry Advisors
Anthony Boral MD, PhD
Blueprint Medicines
Abdelali MAJDI MD
Ipsen
Scott Mellis MD, PhD
Regeneron Pharmaceuticals, Inc.
Participant Advisory Board
Helen Bedford-Gay
United Kingdom
Oliver Collins
Australia
Brooke Connell
Canada
Ciske Faber
South Africa
Jelena Milosevic
Serbia
Manuel Robert
Argentina
Kim Shields
United States
IFOPA Staff
Adam Sherman Research Development & Partnerships Director
Sammi Kile Registry Project Manager
Interested in contributing your patient’s data to the FOP Registry?

Accessing Data from the FOP Registry

The FOP Registry (NCT02745158) is a resource to advance our understanding about FOP and improve clinical care. In addition, data from the Natural History Study of FOP (NCT02322255, a study funded by Ipsen is also available for data requests.

The data request process is straightforward:

1.
Download and complete the FOP Data Request Form.
2.
Submit the form by email to info@FOPregistry.org.
3.
Within a few business days of receipt, the form will be reviewed and a response sent back to the requester.
4.
Communication between the Registry Project Manager and the requester will continue, and may include a letter of intent.
5.
If the request will lead to a publication, the FOP Registry Publication Committee will review and provide approval in a timely manner.
6.
Data compilation and necessary committee reviews will be completed in a timely manner.

Some data requests will be subject to a fee for service. Please request a copy of the fee schedule from the Registry Project Manager.

Download the Data Request Form

Sponsors

The Radiant Hope Foundation provided the visionary funding that launched the FOP Registry. For the next several years, the FOP Registry grew with the cost entirely funded by contributions and fundraising by FOP families. Today we’re fortunate to have sponsors, who help keep the Registry going and growing.

With funding support from Blueprint Medicines, Ipsen and Regeneron Pharmaceuticals, the FOP Registry can continue to meet its goals to accelerate FOP research, to enable clinical trials and to improve our understanding of this disease.

  1. Jansen-van der Weide MC, et al. Rare disease registries: potential applications towards impact on development of new drug treatments. Orphanet Journal of Rare Diseases 2018; 13:154.

 

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