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Article History

Received: 31 October 2022

Accepted: 15 March 2023

First Online: 20 April 2023

Declarations

:

: The study received ethical approval from the Copernicus Group Independent Review Board in the USA. In the UK, the Health Research Authority ethics tool was completed, which indicated that no National Health Service Research Ethics Committee approval was necessary.

: All participants were required to complete consent forms before proceeding to the interview.

: All participants were required to complete consent forms before proceeding to the interview. TM, MB and BB are employees and shareholders of UCB. JA reports patient advocate in training, Parkinson’s Foundation (volunteer work, unpaid). RAB reports receiving grants or contracts from The European Union, Rosetrees Trust, The Medical Research Council, Wellcome, UK Research and Innovation: Digital Research Infrastructure, Aligning Science Against Parkinson’s, and Cure Parkinson’s; receiving royalties for books and editorial work from Wiley and Nature Springer; receiving consulting fees from Novo Nordisk, BlueRock Therapeutics, Aspen Neuroscience, and Transine Therapeutics; participation on a Data Safety Monitoring Board or Advisory Board from the ongoing NIHR-funded exenatide study entitled ‘A randomised, double blind, parallel group, placebo controlled Phase 3 trial of Exenatide once weekly over 2 years as a potential disease modifying treatment for Parkinson's disease’. RAB is a Director of the International Society for Stem Cell Research and is part of the research advisory panel for The Swedish Research Council and Cure Parkinson’s. BRB reports receiving grants or contracts from: The Netherlands Organization for Scientific Research, The Michael J Fox Foundation, Not Impossible Labs, Parkinson Vereniging, Parkinson Foundation, Hersenstichting, The Davis Phinney Foundation, Parkinson NL, Stichting Woelse Waard, Stichting Alkemade-Keuls, Maag Lever Darm Stichting, Verily Life Sciences, Horizon 2020, Topsector Life Sciences and Health, UCB, and Zambon; consulting fees from Critical Path Institute, Kyowa Kirin, UCB, and Zambon; and payment or honoraria for lectures, presentations, speakers bureaus, manuscript writing or educational events from Abbvie, Bial, Biogen, GE Healthcare, Oruen, Roche, UCB, and Zambon. CG, NR and KS report receiving support from UCB for travel, lodging, and meals to attend one in-person, research team scientific meeting for the purpose of PRO development for the present study. Since the completion of the study, NR has changed her affiliation from Parkinson’s UK, London, UK to COUCH Health, Manchester, UK. LG has participated in a Glial Cell Line-Derived Neurotrophic Factor Advisory Board (working voluntarily with Parkinson’s UK as a patient expert). AFS reports receiving consulting fees from UCB for advisory services related to outcome assessment development and patient engagement in early-stage Parkinson’s; receiving payment or honoraria for lectures, presentations, speakers bureaus, manuscript writing or educational events from UCB for a clinical outcomes assessment regulatory workshop presentation that was provided to the patient experts who were involved across this research; receiving travel reimbursement from UCB for attending face-to-face meetings that were relevant to this manuscript. All authors report receiving support from UCB for funding the study and third-party medical writing assistance.