Funding for this research was provided by:
National Institute of Arthritis and Musculoskeletal and Skin Diseases (R01AR073015)
Received: 31 March 2020
Accepted: 8 July 2020
First Online: 29 July 2020
Ethics approval and consent to participate
: This study was not a part of the original analysis for the NHS, but used clinical data collected during the NHS. The Natural History Study was approved by The Committee on Human Research at the University of California (approval number: 14–13854) and also approved by the ethics committees at the five other study sites institutions (University of Pennsylvania Institutional Review Board; Comité de Protection des Personnes, Ile de France II; Comitado Etico Regionale San Martino, Hospital Italiano Comité de Ética de Protocolos de Investigacion; NHS Health Research Authority, London-Stanmore Research Ethics Committee; Metro South Human Research Ethics Committee). The study was registered at ExternalRef removed (ExternalRef removed), and performed in accordance with the Declaration of Helsinki (2013). All study participants were fully consented before participation in this study.
: Not applicable.
: DRG was a Clementia employee at the time the study was conducted and data were obtained. CDC, GB, MAB, MDR, RK, MAM, FSK, RJP, UM, KLW, and ECH received funding from Clementia to support the Natural History Study and separate interventional studies sponsored by Clementia, an Ipsen company. ECH, MDR, MAM, FSK and RJP, RK, MAB received clinical trials research funding from Regeneron Pharmaceuticals.ECH, DRG, GB, CDC, RK, MAB, MAM, FSK and RJP serve in a volunteer capacity on the Medical Registry Advisory Board of the International Fibrodysplasia Ossificans Progressiva Association. ECH serves in a volunteer capacity on the Fibrous Dysplasia Foundation Medical Advisory Board. ECH, CDC, GB, MAB, MDR, RK, MAM, FSK, and RJP are elected members of the International Clinical Council on FOP. These pose no conflicts for this study.