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International Fibrodysplasia Ossificans Progressiva Association (IFOPA) registry data demonstrate that 52.5% of patients with FOP initially receive an inappropriate diagnosis.*1,2

FOP is often misdiagnosed with common misdiagnoses, including cancer, juvenile fibromatosis, and myositis ossificans.1

*From a total of 299 patients surveyed.

Misdiagnosis and delayed diagnosis can potentially exacerbate disease progression, contributing to the accumulation of disability in patients with FOP3

Patients with FOP see on average 3.3 physicians before receiving a correct diagnosis1

Delay in diagnosis is approximately 1.5 years after symptom onset.1

It is important to receive an earlier and appropriate FOP diagnosis to avoid iatrogenic harm3

Unfortunately, many patients with FOP undergo unnecessary diagnostic and therapeutic interventions that can lead to long-term harm. A survey of 138 patients with FOP found that3:

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of patients underwent invasive procedures for diagnosis that can exacerbate heterotopic ossification3

25%

however, reported inappropriate procedures after diagnosis

49%

of patients reported permanent loss of mobility resulting from invasive medical interventions that caused post-traumatic ossification

Forming an accurate diagnosis may mean that many invasive procedures can be avoided, such as:4,5

Surgery

Traditional physiotherapy, including passive range of motion exercises

Biopsies

Intramuscular injections

Invasive dental procedures

It is important to inform all members of the multidisciplinary team diagnosing and managing patients with FOP to avoid harmful procedures.5

Disclaimer: These recommendations are not the complete guidelines. Please refer to the ICC website to download the full guidance.

Go feet first!

FOP should be suspected if a patient presents with bilateral great toe malformation and tumor-like soft-tissue swellings.3

Think FOP

Diagnosis is clinical but genetic testing for mutation in the ALK2/ACVR1 gene can also be used to help confirm the diagnosis3–5

Signs and symptoms to look out for (malformation of great toes, tissue swelling, scalp nodules in infants, as well as lumps on the neck and back, HO)3,6

What is FOP?

FOP is a progressive, disabling, ultra-rare genetic disorder that is characterized by cumulative and irreversible heterotopic ossification (HO) within soft and connective tissues that leads to loss of mobility and shortened life expectancy.7–9

Learn more

Management
of FOP

Disease management is focused on supportive care and prevention of HO through avoidance of injury and medical procedures that could lead to flare-ups and that may cause FOP to get worse.1,2,5 The International Clinical Council (ICC) on FOP has developed guidance to help you care for your patients living with FOP.5

Find out more

1. Sherman LA et al. Presented at ASBMR 2020; Virtual Event: September 11–15 2020; 2. Sherman LA et al. abstract P841. J Bone Miner Res 2020;35(Suppl 1):1–337. 3. Kitterman JA et al. Pediatrics 2005;116:e654–e66. 4. Di Rocco M et al. Orphanet J Rare Dis 2017;12:110. 5. Kaplan FS et al. Proc Intl Clin Council FOP 2019;1:1–111. 6. Piram M et al. J Am Acad Dermatol 2011;64:97–101. 7. Pignolo RJ, et al. Orphanet J Rare Dis 2019;14:98. 8. Kaplan FS, et al. J Bone 2010;92:686–691. 9. Kaplan FS, et al. J Bone Joint Surg Am 1993;75:220–30.

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Ipsen The information provided here is not intended to replace professional advice. This website has been developed by Ipsen in collaboration with those living with Fibrodysplasia Ossificans Progressiva and the healthcare professionals who care for them. Ipsen would like to thank everyone for their valuable insights and stories. All names used on this website are not necessarily real names. Visit our website for more information about us, or to contact us directly. Website design and development by Kanga Health Ltd. Website reference DM-0350 NON-US-002452 July 2021