Product information and disease description Place of product in therapy Disease description Epidemiology

Prevalence of Fibrodysplasia ossificans progressiva

7 evidence topics · 6 sources

United States: minimum prevalence of 0.88 per million, 2020

“After deduplication, 373 unique patients were identified in the United States, 294 of whom who were not listed as deceased in any list.” (opens the source at this quote in a new tab)
“Based on the application of the survival probability, it is estimated that 279 of these patients were alive on the prevalence date (22 July 2020). An adjusted prevalence of 0.88 per million US residents was calculated” (opens the source at this quote in a new tab)
“This study suggests that the prevalence of FOP is higher than the often-cited value of 0.5 per million.” (opens the source at this quote in a new tab)

“Taking into account the limitations described above, we report an estimated minimum prevalence of 0.88 per million individuals (1 in 1.14 million people) living in the United States.” (opens the source at this quote in a new tab)
“In this study, 11% (n = 31) of patients were 0 to < 10 years, compared to 23% (n = 65) in the ≥ 10 to < 20 years group, and 24% (n = 67) in the ≥ 40 years group.” (opens the source at this quote in a new tab)

France: capture-recapture estimate of 1.36 per million, 2012

“Using a capture-recapture methodology to adjust the crude number of patients identified in both data sources, 89 FOP patients were identified, which results in a prevalence of 1.36 per million inhabitants (CI95% = [1.10; 1.68]).” (opens the source at this quote in a new tab)
“Previous studies in Spain and the United Kingdom estimated FOP prevalence at about one case per two million population” (opens the source at this quote in a new tab)

France: national rare disease registry estimate of 1.39 per million, 2020

“Based on the BNDMR, 94 individuals with FOP were alive on December 31, 2020. Thus, the prevalence was estimated at 1.39 per million (95% CI: 1.13-1.71).” (opens the source at this quote in a new tab)

Apparent prevalence by world region in patient organization databases

“The apparent prevalence of registered and confirmed FOP patients varied substantially from approximately 0.65 per million in North America and 0.47 per million in Western Europe to approximately 0.27 per million in Latin America, 0.05 per million in Africa, to nearly 0.04 per million in the Asia–Pacific region” (opens the source at this quote in a new tab)

Number of known individuals in the United States and worldwide

“Fibrodysplasia ossificans progressiva (FOP) is an ultra-rare, progressive genetic disease affecting approximately 300 people in the United States and 900 worldwide.” (opens the source at this quote in a new tab)

Registry coverage of the known global population

“As of December 2020, the Registry had 323 enrolled patients from 69 countries, approximately 36% of the world’s known FOP population.” (opens the source at this quote in a new tab)

Registry coverage in September 2018

“As of September 20, 2018, 299 individuals (approximately 37% of the world’s known FOP population based on IFOPA estimates) were enrolled, from 54 countries.” (opens the source at this quote in a new tab)