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Authors
Hollin, Ilene L. https://orcid.org/0000-0003-1405-8687
Ilieva, Hristelina https://orcid.org/0000-0001-8318-7533
Pasinelli, Piera https://orcid.org/0000-0002-3385-2707
Chisholm, Laura
Heiman-Patterson, Terry https://orcid.org/0000-0002-9910-1041
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Funding
Funding for this research was provided by:
Mitsubishi Tanabe Pharma Corporation
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Article History
Received: 28 August 2025
Accepted: 3 February 2026
First Online: 27 February 2026
Declarations
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: This study was funded by Mitsubishi Tanabe Pharma America as part of a grant titled “Characterizing outcomes, costs and preferences for treatment settings for patients with ALS and their caregivers. ”
: Anonymized data that supports these findings may be made available by the authors upon reasonable request from any qualified investigator.
: Terry Heiman-Patterson and Ilene Hollin conceptualized the overall study. All authors contributed to the design of the instruments and contributed equally to the acquisition of data. Ilene Hollin conducted the data analysis and drafted the original draft manuscript. All authors commented on previous versions of the manuscript and all authors read and approved the final manuscript.
: Ilene Hollin is a member of the editorial board of The Patient. She was not involved in the selection of peer reviewers for the manuscript nor any of the subsequent editorial decisions. She received salary support from Mitsubishi Tanabe Pharma America for this study. She receives research support that is unrelated from the NIH (K01HL161330). Hristelina Ilieva is a site-PI for the Healey trial, receives research support from Mitsubishi Tanabe Pharma America, Sanofi, and Farber Family Foundation. Piera Pasinelli is supported by grants from NIH (RO1 NS136624; R21 AG093032); ALSUM; Aldrich Foundation; Family Strong4ALS, and Farber Family Foundation. L. Chisholm is supported by funding from Mitsubishi Tanabe Pharma for this grant and has no other relevant disclosures. T. Heiman-Patterson is supported by Mitsubishi Tanabe Pharma America. She receives unrelated funding as site PI for clinical trials from COYA therapeutics, Amylyx, Arcellx, and the Healey Platform trial. She is site PI for All ALS and for the Natural History Consortium.
: This study was approved by the Institution Review Board of Temple University (protocol #29392). The IRB determined that written consent was not required as responding to the survey implied participant consent.
