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	Keqin Zhang MD, PhD Shanghai Tongji University China	Edward Hsiao MD, PhD UCSF School of Medicine United States
Marelise Eekhoff MD, PhD Amsterdam University Medical Center Netherlands	Zvi Grunwald MD Thomas Jefferson University Hospital United States	Nobuhiko Haga MD University of Tokyo Japan	Robert Pignolo MD, PhD Mayo Clinic 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	Christiaan Scott MBChB, FCPaed Red Cross Children's Hospital South Africa

Industry Medical Advisors

Kurt Brown, MD, Incyte

IFOPA Staff

Sammi Kile, Real-World Evidence Manager
Michelle Davis, Executive Director

Interested in contributing your patient’s data to the FOP Registry?

GET STARTED

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:

Download and complete the FOP Data Request Form.

Submit the form by email to [email protected].

Within a few business days of receipt, the form will be reviewed and a response sent back to the requester.

Communication between the Registry Project Manager and the requester will continue, and may include a letter of intent.

If the request will lead to a publication, the FOP Registry Publication Committee will review and provide approval in a timely manner.

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

Thank you to Our Sponsors

Visionary Partner

Incyte

Leadership Partner

Regeneron Pharmaceuticals

Collaborating Partner

Ipsen

Thank you to the Radiant Hope Foundation for the visionary funding that launched the FOP Registry.

Publications

View publications and abstracts that use FOP Registry data.

2022 FOP Registry Annual Report

2021 FOP Registry Annual Report

An ACVR1 Activating Mutation Causes Neuropathic Pain and Sensory Neuron Hyperexcitability in (PAIN - The Journal of the International Association for the Study of Pain 2022)

Caregiver Support in Fibrodysplasia Ossificans Progressiva (Journal of Rare Disease Research and Treatment 2021)

Prevalence of Fibrodysplasia Ossificans Progressiva (FOP) in the United States: Estimate from Three Treatment Centers and a Patient Organization (Orphanet Journal of Rare Diseases 2021)

Social and Clinical Impact of COVID-19 on Patients with Fibrodysplasia Ossificans Progressiva (NIH National Library of Medicine National Center for Biotechnology Information Preprint 2021)

2020 FOP Registry Annual Report

The Diagnostic Journey in Fibrodysplasia Ossificans Progressiva: Insights from the FOP Registry (ASBMR 2020)

Self-reported baseline phenotypes from the International Fibrodysplasia Ossificans Progressiva (FOP) Association Global Registry (Bone 2020)

Longitudinal Evaluation of Pain, Flare‐Up, and Emotional Health in Fibrodysplasia Ossificans Progressiva: Analyses of the International FOP Registry (JBMR Plus 2019)

2019 FOP Registry Annual Report

The FOP Registry: A Global Observational Study of Fibrodysplasia Ossificans Progressiva (Global Genes 2019)

ACVR1-Induced Sensory Neuron Dysfunction in Fibrodysplasia Ossificans Progressiva (ASBMR 2019)

The FOP Connection Registry: Design of an international patient-sponsored registry for Fibrodysplasia Ossificans Progressiva (Bone 2018)

2017 FOP Registry Annual Report

2016 FOP Registry Annual Report

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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