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Article History

Received: 22 July 2024

Accepted: 29 October 2024

First Online: 28 November 2024

Declarations

:

: An ethics approval exemption was granted by Pearl IRB, Indianapolis, IN, USA on 23rd June 2021. The survey protocol is in line with the UK Research Integrity Office’s guidance on good practice in internet-mediated research [].This online survey was anonymous and did not collect any identifiable data on individuals. Participants were provided with a data privacy statement and consented for their responses to be analysed.

: Not applicable.

: LD and RD are employees of Wickenstones Ltd, Oxford, United Kingdom. SP is an employee of Mereo BioPharma Group, London, United Kingdom. At the time of the survey design and development of this report, SP was an employee of Wickenstones Ltd. CR has received payments for their contributions to the present manuscript. TH serves as the Chief Executive Officer of the Osteogenesis Imperfecta Foundation, which has received unrestricted educational grants from Mereo BioPharma Group London, United Kingdom and Ultragenyx Pharmaceuticals Inc, Novato, USA. OS has participated in a national advisory board for Mereo BioPharma Group London, United Kingdom and has received study contracts for clinical studies from Ultragenyx Pharmaceuticals Inc, Novato, USA. FR has received study contracts for experimental preclinical studies with Precithera Inc, Quebec, Canada, Mesentech Inc, Vancouver, Canada and Catabasis Pharmaceuticals Inc, Cambridge, USA. He has participated in advisory boards for Ultragenyx Pharmaceuticals Inc, Novato, USA, Sanofi S.A. Paris, France, Novartis International AG, Basel, Switzerland and Mereo BioPharma Group, London, United Kingdom. FR has received a speaker fee from Ultragenyx Pharmaceuticals Inc, Novato, USA for a lecture and received a donation of experimental drugs for a preclinical study from Acceleron Pharma Inc, Cambridge, USA. CR received an institutional grant from and has been a speaker for BioMarin Pharmaceuticals Inc, Novato, California, has participated in advisory boards for Ultragenyx Pharmaceuticals Inc, Novato, USA. She has received an institutional grant from and is a consultant for Nextcure, Beltville, MD, USA. CR sits on the board of directors of the Osteogenesis Imperfecta Foundation. CR has also participated in an advisory board for Mereo BioPharma Group, London, United Kingdom. TW and IW hold leadership positions in the Osteogenesis Imperfecta Federation Europe, which has received grants from Mereo BioPharma Group, London, United Kingdom (unrestricted), Ultragenyx Pharmaceuticals Inc, Novato, USA (restricted grant for a conference), Quince Therapeutics Inc, San Francisco, CA, USA (donation for a conference), UCB (restricted grant to conference), Angitia Biopharmaceuticals Inc., Woodland Hills, CA, USA (donation to conference), Azafaros BV, Naarden, the Netherlands (donation to conference), Alexion Inc. Boston, MA, USA, (sponsorship of conference); Pega Medical Inc, Laval, Quebec, Canada (donation), PuREC, Shimane, Japan (sponsorship of conference), Takeda, Tokyo, Japan (payment to IW as a panellist; donated to OIFE).