Can YOU Avoid Iatrogenic Harm? Understanding and Identifying Fibrodysplasia Ossificans Progressiva

Curriculum Description

Fibrodysplasia ossificans progressiva (FOP) is a debilitating, ultra-rare, autosomal dominant genetic disorder causing painful, episodic extra-skeletal bone formation often preceded by inflammatory soft tissue swelling. These inflammatory flare-ups can progressively lead to a permanent loss of mobility, decreased quality of life, and a shortened lifespan. FOP is frequently misdiagnosed, leading to unintentional, irreversible harm to patients, who can experience a flare-up from routine medical care like dental work or vaccines. Thus, it is critical that providers quickly and correctly identify FOP, which can be easily detected by examining the great toe for malformations.

In order to educate clinicians on the pathophysiology and full spectrum of clinical manifestations of FOP, PeerView, the American Society for Bone and Mineral Research (ASBMR), the International FOP Association (IFOPA), and PeerView's FOP Scientific and Patient Voice Consortium have prepared this Education Collection comprising four unique microlearning modules, video diaries, and a 3D animation. Participation in this activity will help familiarize learners with up-to-date clinical science and best practices for identifying FOP. By completing these educational activities, learners will be better able to recognize and understand FOP and its manifestations and avoid iatrogenic harm caused by diagnostic errors.

Target Audience

This activity has been designed to meet the educational needs of endocrinologists, orthopedic surgeons, rheumatologists, oncologists, dermatologists, geneticists,  and other healthcare professionals involved in the care of patients with fibrodysplasia ossificans progressiva.

Steering Committee

Video Updates

Patient and Caregiver Perspectives on Their FOP Journey

Patient and Caregiver Roles at the Center of the Multidisciplinary FOP Care Team

FOP Take-Aways From the 2023 Annual Meeting of The American Society for Bone and Mineral Research

Recognizing and Managing Flare-Ups in FOP

Modules

 17:13

Needle in a Haystack: Recognizing the Prevalence and Disease Burden of FOP

Review the prevalence of FOP and the burden it can have on patients' quality of life and lifespans.

 10:46

Taking Cues From Genetics: Understanding the Pathophysiology of FOP

Learn about the genetic pathophysiology of FOP, including the ACVR1 gene and R206H mutation.

 17:13

Learning From Others’ Mistakes: Avoiding Common Pitfalls in FOP Misdiagnosis

Examine the common misdiagnoses for FOP, the consequences of incorrect or delayed diagnosis, and strategies for correctly identifying the disease.

 19:05

Treating the Whole Person: Improving Outcomes and Quality of Life for Patients With FOP

See the whole patient with strategies for personalizing treatment plans, managing adverse events, and treating the full spectrum of FOP manifestations and challenges.

Practice Aids and Resources

• Emergency Guidelines for First Responders, Physicians, and Dentists
• Personalized Emergency Medical Form - English
• Personalized Emergency Medical Form - German
• Personalized Emergency Medical Form - Spanish
• Personalized Emergency Medical Form - Swedish

Playlist

Providership & Support

This education collection is provided by PVI, PeerView Institute for Medical Education, in partnership with The American Society for Bone and Mineral Research, the International Fibrodysplasia Ossificans Progressiva Association, and the Progressive Osseous Heteroplasia Association.

This activity is supported by an independent medical education grant from Regeneron Pharmaceuticals, Inc.