Dialogues about FOP: What Patients Wish More Doctors Knew to Enhance Early Recognition and Management
April 6, 2023
August 17, 2024
Jointly provided by Partners for Advancing Clinical Education (PACE) and PlatformQ Health Education, LLC.
Collaboration with the National Organization for Rare Disorders, Inc. (NORD) and the International Fibrodysplasia Ossificans Progressiva Association (IFOPA).
This activity is supported by an independent medical education grant from Regeneron Pharmaceuticals, Inc.
- Physicians — maximum of 1.0 AMA PRA Category 1 Credit(s)™
- Nurses — 1.0 Contact Hours
All other healthcare professionals completing this course will be issued a statement of participation.
The educational design of this activity addresses the needs of the primary audience of PCPs, pediatricians, dermatologists, endocrinologists, occupational therapists, oncologists, general practice NPs and PAs, specialist NPs and PAs, and the secondary audience of orthopedists, bone specialists, rheumatologists, pediatric rheumatologists, genetic counselors, and dentists.
Statement of Need/Program Overview
Fibrodysplasia ossificans progressiva (FOP) causes abnormal bone formation in muscles and soft tissues in episodic “flare-ups” that lead to heterotopic ossification (HO), or replacement of muscle with bone. Ectopic bone formation leads inevitably to severe disability and early death. Because the disease is rare and many clinicians are unfamiliar with its presentation, diagnosis is often missed or delayed by many years. Yet early recognition is crucial to preventing trauma and avoiding medical and surgical interventions that trigger flare-ups and worsen patients’ disability and quality of life. Primary care clinicians have a crucial role in recognizing the condition early and helping patients to avoid triggers.
Join a panel of expert clinicians, a patient with FOP and/or their caregiver, and a representative from the International FOP Association (IFOPA) for an interactive dialogue. Panelists will share their experiences with FOP to help clinicians better recognize its hallmark signs and symptoms, make an early and accurate diagnosis, provide appropriate referrals, and offer the most current standard of care.
After completing this activity, the participant should be better able to:
- Recognize early hallmark signs and symptoms that may be conducive to a diagnosis of FOP
- Develop strategies to work with patients and caregivers to reduce risk of trauma and recognize flare ups early to initiate the recommended management plan
- Describe the impacts of FOP on patients’ and caregivers’ quality of life over the disease course
Edward Hsiao, MD, PhD
Division of Endocrinology and Metabolism
University of California, San Francisco
Director, UCSF Metabolic Bone Clinic
Hope Newport, MA, CCLS
Family Services Manager
International FOP Association
International FOP Association
Parent of a child with Fibrodysplasia Ossificans
Interview participant – Patient with FOP
Joint Accreditation Statement
In support of improving patient care, this activity has been planned and implemented by Partners for Advancing Clinical Education (PACE) and PlatformQ Health Education, LLC. PACE is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC), to provide continuing education for the healthcare team.
Physician Credit Designation
PACE designates this enduring material for a maximum of 1.0 AMA PRA Category 1 Credit™. Physicians should claim only the credit commensurate with the extent of their participation in the activity.
Disclosures of Conflicts of Interest
PACE requires instructors, planners, managers, and other individuals who are in a position to control the content of this activity to disclose all financial relationships they may have with ineligible companies. All relevant financial relationships are thoroughly vetted and mitigated according to PACE policy. PACE is committed to providing learners with high-quality accredited CE activities and related materials that promote improvements or quality in healthcare and not a specific proprietary business interest of an ineligible company.
The faculty reported the following relevant financial relationships or relationships to products or devices they have with ineligible companies related to the content of this educational activity:
- Edward Hsiao, MD, PhD
- Researcher: Ipsen Pharmaceuticals, Ultragenyx
Hope Newport, MA, CCLS, has no relevant financial relationship(s) to disclose.
Michelle Davis, has no relevant financial relationship(s) to disclose.
Lisa Gillooly, has no relevant financial relationship(s) to disclose.
Sharon Kantanie, has no relevant financial relationship(s) to disclose.
The PACE planners and others have no relevant financial relationship(s) to disclose with ineligible companies. The PlatformQ Health Education, LLC planners and others have no relevant financial relationship(s) to disclose with ineligible companies.
Instructions for Participation and Credit
In order to receive credit for this activity, the participant must (1) read the target audience, learning objectives, and disclosure statements, (2) complete the educational activity online, and (3) complete the post-test and activity evaluation. To receive AMA PRA Category 1 Credits™, participants must receive a score of 75% on the post-test
Participants will need a computer with a recent version of Adobe Flash installed, as well as an internet connection sufficient for streaming media.
Disclosure of Unlabeled Use
This educational activity may contain discussion of published and/or investigational uses of agents that are not indicated by the FDA. The planners of this activity do not recommend the use of any agent outside of the labeled indications.
The opinions expressed in the educational activity are those of the faculty and do not necessarily represent the views of the planners. Please refer to the official prescribing information for each product for discussion of approved indications, contraindications, and warnings.
Participants have an implied responsibility to use the newly acquired information to enhance patient outcomes and their own professional development. The information presented in this activity is not meant to serve as a guideline for patient management. Any procedures, medications, or other courses of diagnosis or treatment discussed or suggested in this activity should not be used by clinicians without evaluation of their patient’s conditions and possible contraindications and/or dangers in use, review of any applicable manufacturer’s product information, and comparison with recommendations of other authorities.
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