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Article History

Received: 26 September 2022

Accepted: 23 August 2023

First Online: 28 September 2023

Competing interests

: M.D.R. is a principal investigator (PI) of Regeneron Pharmaceuticals and Ipsen trials. E.F.-N., C.P.-C., N.S., P.H., B.J.M., A.B., K.M., S.J.M., A.J.R., A.N.E., D.G.T., G.A.H., S.J.O., R.D., D.M.W. and G.D.Y. are employees of and hold stocks and shares in Regeneron Pharmaceuticals. R.J.P. is a PI of the Regeneron Pharmaceuticals LUMINA-1 and Clementia/Ipsen MOVE trials; a founding member and immediate past president of the International Clinical Council on FOP; and chair of the International Clinical Council Publications Committee. R.K. is a PI of clinical trials sponsored by Clementia/Ipsen and Regeneron Pharmaceuticals and is a non-paid member of the International Clinical Council on FOP and IFOPA registry advisory board. P.O. is a PI of clinical trials sponsored by Regeneron Pharmaceuticals. T.F.-B. is a sub-investigator of the Regeneron Pharmaceuticals LUMINA-1 trial and PI of IPSEN FALKON trial. C.R. has received research grants to their institution from Regeneron Pharmaceuticals. S.K. is a sub-investigator of the Regeneron Pharmaceuticals LUMINA-1 trial. A.M. is a sub-investigator in clinical trials sponsored by Regeneron Pharmaceuticals and Clementia-Ipsen. J.S.B. is a sub-investigator of the Regeneron Pharmaceuticals LUMINA-1 and Clementia/Ipsen MOVE trials. J.T. received grants to their institution (University Rzeszów) as a speaker for Merck and Novartis, and is a hired scientific expert for SoftSystem. M.S. is a speaker for Roche. J.B.-C. is an investigator of a clinical trial sponsored by Regeneron Pharmaceuticals. A.M.C. received a grant to their institution (University Health Network) for a clinical trial. K.M.D. is a PI on the Regeneron Pharmaceuticals LUMINA-1 trial. This project was supported by CTSA award no. UL1 TR002243 from the National Center for Advancing Translational Sciences. Its contents are solely the responsibility of the authors/sponsor and do not necessarily represent official views of the National Center for Advancing Translational Sciences or the National Institutes of Health. E.B. is a sub-investigator of the Regeneron Pharmaceuticals LUMINA-1 trial at Amsterdam UMC, The Netherlands. P.G.R. is a sub-investigator of the Regeneron Pharmaceuticals LUMINA-1 trial at Amsterdam UMC, The Netherlands. M.A.M. is a PI of clinical trials sponsored by Clementia/Ipsen, Regeneron Pharmaceuticals and Incyte; and is a non-paid member of the International Clinical Council on FOP and IFOPA registry advisory board. L.T. received a grant to their institution (University Health Network) for a clinical trial (as a sub-investigator). E.M.W.E. receives subsidies/financing FOP research from the Dutch FOP Patient Foundation, IFOPA, Regeneron Pharmaceuticals, EU-IMI (AZ) and Clementia/Ipsen; holds non-paid board memberships for the International Clinical Council on FOP, IFOPA registry advisory board, Dutch Society for Endocrinology (NVE) BoNe; is a representative for Amsterdam Bone Center and Rare Bone Expert Center, European FOP consortium investigators; is a member of the ERN BOND and ASBMR committee; and is lead clinical PI on the Regeneron Pharmaceuticals LUMINA-1 trial. F.S.K. is a founding member and past president of the International Clinical Council on FOP; a member of the Medical Advisory Board of the IFOPA Global Registry; and a global PI on the Regeneron Pharmaceuticals LUMINA-1 and the Clementia/Ipsen MOVE trials.