Updates are available Correction dated 2024-01-09

Article History

Received: 15 June 2023

Accepted: 2 October 2023

First Online: 24 October 2023

Change Date: 9 January 2024

Change Type: Correction

Change Details: A Correction to this paper has been published:

Change Details: https://doi.org/10.1186/s40900-023-00538-y

Declarations

:

: Both phases of the research reported here received ethical approval from the Copernicus Group Independent Review Board in the USA. For the first phase, in the UK, the Health Research Authority ethics tool was completed, which indicated that no National Health Service Research Ethics Committee approval was necessary. As this was a non-interventional interview study with recruitment facilitated by patient associations and not the National Health Service (NHS), the UK Health Research Authority ethics committee indicated no NHS ethics approval was required for the second phase of the research. For both phases, all participants were required to complete consent forms before proceeding to the interview.

: Not applicable.

: TM is an employee and shareholder of UCB. JA reports that they are a patient advocate in training, Parkinson’s Foundation (volunteer work, unpaid). 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 this research. Since the completion of the research, NR has changed her affiliation from Parkinson’s UK, London, UK to COUCH Health, Manchester, UK and KS has changed her affiliation from Parkinson's Foundation, New York, NY, USA to Novartis, New Jersey, NJ, USA. 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.