Rauch, Frank
van Welzenis, Taco
Wekre, Lena Lande
Raggio, Cathleen
Semler, Oliver
Westerheim, Ingunn
Mulhall, Heather
Anderson, Melanie
Prince, Samantha
Hart, Tracy
Funding for this research was provided by:
Mereo BioPharma
Article History
Received: 15 May 2025
Accepted: 4 September 2025
First Online: 23 September 2025
Declarations
:
: Heather Mulhall and Melanie Anderson are employees of Wickenstones Ltd, Oxford, UK. Samantha Prince is an employee of Mereo BioPharma Group London, UK. At the time of the survey design and development of this research, Samantha Prince was an employee of Wickenstones Ltd. Ingunn Westerheim, Tracy Hart, Taco van Welzenis, Lena Lande Wekre, Oliver Semler, Cathleen Raggio, and Frank Rauch have provided expert consulting to Mereo BioPharma Group London, UK. Tracy Hart serves as the Chief Executive Officer of the Osteogenesis Imperfecta Foundation, who have received unrestricted educational grants from Mereo BioPharma Group London, UK and Ultragenyx Pharmaceuticals Inc, Novato, USA. Oliver Semler has participated in a national advisory board for Mereo BioPharma Group London, UK and has received study contracts for clinical studies from Ultragenyx Pharmaceuticals Inc, Novato, USA. Frank Rauch 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, UK. Frank Rauch 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. Cathleen Raggio 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. Cathleen Raggio sits on the board of directors of the Osteogenesis Imperfecta Foundation. Cathleen Raggio has also participated in an advisory board for Mereo BioPharma Group, London, UK. Taco van Welzenis and Ingunn Westerheim hold leadership positions in the Osteogenesis Imperfecta Federation Europe, which has received grants from Mereo BioPharma Group, London, UK (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) and Takeda, Tokyo, Japan (payment to Ingunn Westerheim as a panellist; donated to OIFE).
: The need for informed consent was waived, and an ethics approval exemption was granted for this study by Pearl IRB Indianapolis, IN, USA, (registered with OHRP and FDA; organisation number 0006471, registration number 00007772) according to FDA 21 CFR 56.104 and 45CFR46.104(b)(2): (2) Tests, Surveys, Interviews on 23 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 identifiable data on individuals. Participants were provided with a data privacy statement and consented for their responses to be analysed. Further, the study aligned with key principles of the European Pharmaceutical Market Research Association (EphMRA) Code of Practice, including informing respondents in the survey landing page with a clear understanding of the purpose of the data collection, how it will be used (i.e. analysis and publication), anonymity, non-promotion, the right to withdraw, participation is voluntary, and data protection principles []. Additionally, the study aligns with the key principles of the International Chamber of Commerce (ICC)/European Society for Opinion and Marketing Research (ESOMAR) International Code on Market, Opinion and Social Research and Data Analytics, including transparent information on what data will be collected, how it will be used and who it may be shared with; and ensuring data protection and ethical behaviour by researchers []. Participants were informed of the use of the data (as described above) prior to initiating the survey and indicated their consent by continuing to enter and complete the survey. Because the survey collected sensitive information about participants, all data were anonymised from data collection onwards. Participants did not provide names, email addresses or other identifiers, and internet protocol (IP) addresses were never captured within the survey platform. Provided data were handled in line with General Data Protection Regulation (GDPR) guidance [].