ALS longitudinal studies with frequent data collection at home: study design and baseline data

Affiliates Seward B. Rutkove[1], Kristin Qi[1], Kerisa Shelton[2], Julie Liss[3], Visar Berisha[4] & Jeremy M. Shefner[2]


[1] Department of Neurology, Beth Israel Deaconess Medical Center, Boston, MA, USA
[2] Department of Neurology, Barrow Neurological Institute, Phoenix, AZ, USA
[3] Department of Speech and Hearing Science, Arizona State University, Phoenix, AZ, USA
[4] University of Arizona College of Medicine, Phoenix, AZ, USA

Journal Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration
Summary This research article covers the possibility of designing and implementing an ALS clinical study in which patients are remotely recruited, screened, enrolled, and then assessed via daily data collection at home by themselves or caregivers. Recruitment was done on the internet through advertisements and recruits were screened and enrolled remotely. Participants in the self-assessment were asked to collect data daily for three months and twice-weekly for the subsequent six months. The study aims to reduce the number of participants required for ALS clinical studies, increase the frequency in which patient data is obtain, and make it more convenient for patients to a participate by removing distance travel to clinical centers.
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