From January 18 through April 30, 2021, IPSEN, with the support of the IFOPA and FOP national organizations, conducted the first international FOP Burden of Illness Survey. People with FOP and their family members took part in the online survey which was available across 15 countries and in 11 languages.
Researchers used multiple assessments to measure patients' movement and ability to carry out daily activities, quality of life for patients and family members, use of adaptive tools (also commonly referred to as living adaptations) by patients, and the impact of FOP on employment for patients and family members.
On September 21, 2022, the Burden of Illness Survey was published in the journal Expert Review of Pharmacoeconomics and Outcomes Research. On October 31, 2022, a Plain Lanugauge Summary written for FOP families was published in Future Medicine. The Plain Language Summary will soon be released in the 11 languages the survey was conducted in.
The IFOPA is grateful to the 405 individuals from around the world that participated in the Burden of Illness Study. The IFOPA is also grateful to IPSEN for funding this important research and for their commitment to ensuring that it is available to families through open-access publications, as well as providing the Plain Language Summary in the 11 languages of the families that participated.