Stenson, Katie http://orcid.org/0000-0001-6860-7587
Fecteau, T. E. http://orcid.org/0000-0001-9519-4597
O’Callaghan, L. http://orcid.org/0000-0002-4643-1557
Bryden, P.
Mellor, J. http://orcid.org/0000-0002-6868-5224
Wright, J. http://orcid.org/0000-0002-7380-9754
Earl, L. http://orcid.org/0009-0004-1770-0772
Thomas, O. http://orcid.org/0000-0001-8282-2566
Iqbal, H. http://orcid.org/0000-0001-8662-2318
Barlow, S. http://orcid.org/0000-0001-5604-1360
Parvanta, S.
Funding for this research was provided by:
Biogen
Article History
Received: 24 August 2023
Revised: 28 November 2023
Accepted: 29 November 2023
First Online: 11 January 2024
Declarations
:
: KS, TEF and PB are employees of Biogen. LO was an employee of Biogen at the time of the study. JM, JW, LE, OT, HI and SB are employees of Adelphi Real World, who received funding from Biogen for this analysis. SP is an employee of the ALS Association.
: Data collection was undertaken in line with the European Pharmaceutical Marketing Research Association guidelines (EphMRA Code of Conduct 2019) and therefore ethics committee approval was not required. However, the questionnaires used in the Adelphi ALS DSP, were reviewed, and given exemption by the Western Institutional Review Board (Reference No. AG8802). Using a checkbox, pALS and cALS provided informed consent to take part in the survey. The survey was performed in full accordance with relevant legislation at the time of data collection, including the US Health Insurance Portability and Accountability Act 1996 (United States Department of Health & Human Services Summary of the HIPAA Privacy Rule 1996) and the Health Information Technology for Economic and Clinical Health Act legislation (HITECH Act 2009).