International Clinical Council on FOP Updates and Adds Sections to the Current Guidelines

In July, the International Clinical Council on FOP issued the 3rd Edition of the FOP Treatment Guidelines. This is the first full update of the Treatment Guidelines since 2019. Almost every section has been updated, so it is important to use this edition rather than previous ones. If you have previously shared the Treatment Guidelines with your local doctors, please send them the link to the 3rd Edition.

The major changes or entirely new sections include:

• The Executive Summary of Key Practice Points

• The Developmental Biology of the Great Toe Malformation in FOP

• Off-Label Use of Potent Medications for Managing Inflammation in FOP

• Clinical Trial Results

• Immunizations

• COVID

• Developmental Arthropathy & Degenerative Joint Disease in FOP

• Ingrown Toenails in FOP

• Fractures in FOP

• Nutrition, Calcium & Vitamin D Guidelines in FOP

• Preventive Oral Health Issues in FOP

• Extraction of Wisdom Teeth

• Swallowing and FOP

• Women’s Health in FOP

• Gastrointestinal Issues in FOP

• Pregnancy Issues in FOP

• Impact of FOP on Patients and Families

• Unmet Needs in FOP

• Classes of Medications (Table 1)

• Emergency Guidelines

• Disclosures

• Author’s Contact Information

• Targets & Potential Treatments in FOP (Figure 1)

Below is the opening letter from Drs. Kaplan and Pignolo, Corresponding Editors of the Treatment Guidelines.

Dear Members of the FOP Community,

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 ultra-rare condition of FOP for which evidence-based information is limited.

Although there are common physical features shared by every person who has FOP, there are physiological differences among individuals that may alter the potential benefits or risks of any medication or class of medications discussed here. The decision to use or withhold a particular medication must ultimately rest with an individual patient and his or her physician.

With an approved medication in the US, Canada, and Australia and ongoing clinical trials throughout the world and additional ones on the horizon, we anticipate that this document will be updated frequently.

We sincerely hope that this 3rd edition of The FOP Treatment Guidelines will be useful and relevant to FOP patients, families, physicians, dentists, medical personnel and caregivers worldwide.

Sincerely,

Frederick S. Kaplan, MD; The University of Pennsylvania, Philadelphia, Pennsylvania
Robert J. Pignolo, MD, PhD; The Mayo Clinic, Rochester, Minnesota
Corresponding Editors