Document is current

Article History

Received: 27 May 2025

Accepted: 11 December 2025

First Online: 7 January 2026

Declarations

:

: Justin R. Abbatemarco and Devon S. Conway or their institutions have received compensation from research and funding organizations and/or pharmaceutical companies for speaking, consulting, and/or contracted research. Adrian Kielhorn, Jeffrey C. Yu, and Sami Fam are employees of Alexion, AstraZeneca Rare Disease, and hold stock or stock options in AstraZeneca. Kelley Myers and Christine Poulos are employees of RTI Health Solutions, which received funding from Alexion, AstraZeneca Rare Disease, to conduct this research.

: Before pretesting, the survey was reviewed by the Institutional Review Board at Research Triangle Institute International (Research Triangle Park, NC, USA), which determined it to be exempt from full review on the basis of the level of risk and nature of the research (STUDY00022088).

: All pretest participants provided informed consent. The project leader or their authorized designee conducted the informed consent process for the pretest interviews. Participants reviewed the informed consent and provided verbal consent before the pretest interview began. All online survey participants provided informed consent before entering the programmed survey. The informed consent for participating in the online survey was programmed for online administration.

: Not applicable.

: Portions of the data reported here were presented as a poster at the American Academy of Neurology (AAN) Summer Conference, 19–20 July 2024, Atlanta, GA, USA, and were submitted as an abstract to the American Academy of Neurology (AAN) Annual Meeting, 5–9 April 2025, San Diego, CA, USA.

: Conceptualization—Kelley Myers, Christine M. Poulos, Justin R. Abbatemarco, and Devon S. Conway; data curation—Kelley Myers; formal analysis—Kelley Myers, Christine M. Poulos, and Justin R. Abbatemarco; investigation—Kelley Myers and Justin R. Abbatemarco; methodology—Kelley Myers, Christine M. Poulos, Justin R. Abbatemarco, and Devon S. Conway; project administration—Kelley Myers; supervision—Kelley Myers and Christine M. Poulos; critical review and approval of final version for submission—Justin R. Abbatemarco, Adrian Kielhorn, Jeffrey C. Yu, Sami Fam, Kelley Myers, Devon S. Conway, and Christine M. Poulos.

: Data will be made available to qualified investigators upon reasonable request to the corresponding author.