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Article History

Received: 19 September 2024

Revised: 7 October 2024

Accepted: 8 October 2024

First Online: 15 January 2025

Declarations

:

: ERD has ownership interests in Included Health, Mediflix, SemCap, Synapticure. He has received Honoraria from Adivo Associates France, American Neurological Association, Elsevier, HMP Education, International Parkinson and Movement Disorder Society, Massachusetts Medical Society, Michael J. Fox Foundation, National Institutes of Health, National Multiple Sclerosis Society, Northwestern University, Patient-Centered Outcomes Research Institute, Philadelphia Neurological Society, Stanford University, Sutter Health, Texas Neurological Society, University of Toronto, He has consulted for Abbott, Abbvie, Acadia, Acorda Therapeutics, Advarra, Biogen, Biohaven Pharmaceuticals, BioSensics, Boehringer Ingelheim, Caraway Therapeutics, Cerevance, CuraSen, DConsult2, Denali Therapeutics, Eli Lilly, Genentech, Health & Wellness Partners, HMP Education, Kairos Cinema, LLC (PBS), Karger, KOL groups, Life Sciences Consultant, Mediflix, Medrhythms, Merck, Mitsubishi Tanabe Pharma America, Inc., MJH Holdings, NACCME, Novartis, Otsuka, Praxis Medicine, Sanofi, Seelos Therapeutics, Spark Therapeutics, Springer Healthcare, Theravance Biopharmaceuticals, WebMD. He has received Grant funding from Averitas Pharma, Biogen, Burroughs Wellcome Fund, Michael J. Fox Foundation, National Institutes of Health, Pfizer, Photopharmics, Roche, Safra Foundation. JLA has received research support from the Michael J. Fox Foundation for Parkinson’s Research, Critical Path for Parkinson’s, NIH/NINDS, Biogen, the Huntington Study Group, and PhotoPharmics; received compensation as a consultant/steering committee/advisory board member from the Huntington Study Group, the Parkinson Study Group, AbbVie, VisualDx, BioSensics, Sana Biotechnology, Neuron23, Lundbeck, Biohaven, and the Michael J. Fox Foundation for Parkinson’s Research; received honoraria for speaking from the Huntington Study Group, the Parkinson Study Group, and American Neurological Association. JRM has consulted for and/or received research support from The Michael J Fox Foundation for Parkinson’s Research, Critical Path for Parkinson’s, National Institutes of Health/NINR, Sigma Theta Tau International, and Lundbeck. The following authors (MK, AL, RA, VR, DS YX, PA, MT) have no conflict of interest to disclose.

: This study used COREQ criteria to guide reporting of qualitative findings.

: IRB approval for all study procedure was provided by University of Rochester (IRB#00006429) and University of Massachusetts, Dartmouth (IRB#23.044). Electronic informed consent was obtained prior to data collection, and study procedures were conducted in accordance with the Declaration of Helsinki. Citation: (2013) World Medical Association Declaration of Helsinki ethical principles for medical research involving human subjects. JAMA: Journal of the American Medical Association 310, 2191-2194.