The International Clinical Council On Fop

The ICC is an autonomous and independent group of 21 internationally recognized clinical experts (MDs & Dentists) in FOP from 14 nations and 5 continents. In June 2017, the International Clinical Council (ICC) on FOP was established to consolidate a global voice for the best practices for clinical care and clinical research for people who suffer from FOP. on best practices for the care of individuals with FOP. on the design and conduct of interventional trials in FOP patients(Dec. 2, 2020 – Editorial from the ICC regarding clinical trials) from time-to-time the FOP Clinical Guidelines.

The International Clinical Council on FOP released an updated version of the treatment guidelines in July 2024. This is the first full update since 2019. Read the International FOP Association summary of updates here. The full copy of the guidelines is available here, and at the link on the top of every page on our website. We encourage you to share this with your doctors and other clinicians involved in the care of FOP. First prospective study to assess the association of fibrodysplasia ossificans progressive (FOP) flare-ups and extra-skeletal bone growth (heterotopic ossification or HO) with functional impairment

PARIS, France, 28 September 2022 – Ipsen (Euronext: IPN; ADR: IPSEY) today announced the publication of its Natural History Study (NHS) of FOP in Genetics in Medicine, the official journal of the American College... This is the first time a global, prospective, longitudinal evaluation of FOP has been carried out, with data collected over a period of 36 months. Findings demonstrated the debilitating impact and progressive nature of the disease, with the greatest progression of new heterotopic ossification (HO; or bone growth that takes place outside of the normal skeletal system in joints... “Natural history studies are essential to understanding ultra-rare diseases with high unmet need like FOP, increasing our knowledge around the natural course of disease, diagnoses, monitoring techniques, potential biomarkers and new outcome measures,” said... Robert Pignolo, Professor of Geriatric Medicine, Mayo Clinic, USA. “This is the first study of its kind following the progression of FOP over three years.

These results demonstrate the significant impact of the disease on people living with FOP. Furthermore, it will facilitate the evaluation of meaningful endpoints in the development of new therapies, which are critically needed for individuals with FOP.” Results from the NHS demonstrated at month 36, across the whole study population, a mean of 2.6 body regions with new HO; this was highest (3.9) in those aged between two and eight years... However, although individuals aged 25 – 65 years had the lowest new HO volume at annual visits, approximately 70% continued to accumulate new HO across the duration of the study. These data confirmed the progressive nature of FOP with characteristic patterns of growth, starting in younger individuals initially across the upper and mid-torso, progressing into hip and lower-leg regions, and with accumulation of HO... The assessment of flare-ups showed, 82 (71.9%) individuals experienced a total of 229 flare-ups, most commonly in the upper back (17.9%), hip (14.8%) and shoulder (10.9%).

Individuals between the ages of two and eight years, were most likely to report more than one flare-up throughout the study duration. For those who experienced flare-ups, the most common symptoms were pain and soft tissue swelling. Imaging at the site of the flare-up revealed HO occurring at the time of the flare-up, with many individuals going on to experience new HO in the following 12 weeks.1 On behalf of the International Clinical Council on FOP (ICC) and its 21 members, 2 emeritus members, and six consultants, we are pleased to introduce the 2024 edition of THE MEDICAL MANAGEMENT OF FIBRODYSPLASIA OSSIFICANS PROGESSIVA: CURRENT TREATMENT CONSIDERATIONS (also known as The FOP Treatment Guidelines). The ICC has worked assiduously on this document which represents a monumental effort on the part of many.

This report contains many new sections that we hope you will find useful, as well as completely updated sections that you found useful in the past. You will notice the Executive Summary of Key Practice Points (Section II). It is conservative, informative, and balanced – supported by the detailed exposition of the larger report. We emphasize that this document reflects the authors’ experience and opinions on the various topics and classes of symptom-modifying medications and is meant only as a guide to this area of therapeutics for the...

People Also Search

• International Clinical Council on Fibrodysplasia Ossificans Progressiva
• The International Clinical Council on FOP
• Medical guidelines for fibrodysplasia ossificans progressiva
• Blog 2 — ICCFOP
• ICC Releases 3rd Edition of the FOP Treatment Guidelines
• Updated international FOP treatment guidelines - FOP Australia
• PDF Draft 9 - NationBuilder
• Ipsen's global Natural History Study of Fibrodysplasia Ossificans ...
• Introduction — ICCFOP
• Medical Guidelines for FOP Published in JBMRPlus