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Authors
Baldwin, Jessica
Engmann, Natalie
Stanczyk, Sonya
McKay, Kristin
Pokrzywinski, Robin
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Funding
Funding for this research was provided by:
Denali Therapeutics
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Article History
Received: 26 November 2025
Accepted: 12 May 2026
First Online: 12 June 2026
Declarations
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: Jessica Baldwin and Natalie Engmann are employees of Denali Therapeutics, which funded this study. Sonya Stanczyk and Robin Pokrzywinski are employees of Thermo Fisher Scientific and members of the PPD™ Evidera™ Patient Centered Research team, hired by Denali Therapeutics to consult on this project. Kristin McKay is an employee of Project Alive, which receives financial support from Denali Therapeutics through event sponsorships and grants.
: The research was performed in accordance with the Helsinki Declaration of 1964 and its later amendments. The study protocol and informed consent procedures were approved by Advarra Institutional Review Board (Columbia, MD, USA; Pro00040794). Prior to interviews, participating caregivers provided informed consent and consent to be audio recorded.
