Abstract
Introduction: The median survival time in ALS is approximately 3 years, but survival times range from less than a year to more than 10 years and much variance in disease course remains to be explained. As is true for physical outcomes, there is considerable variance in QOL, which is influenced by psychological health, coping, and social support, among other psychosocial factors. The Seattle ALS Patient Project Database (SALSPPD) provides a unique opportunity for researchers to address established and novel hypotheses about disease progression and QOL in ALS.
Methods: The SALSPPD is a longitudinal dataset of people with ALS (n = 143) and their partners (spouses, significant others, or caregivers; n = 123) from clinics and community-based ALS support groups. Participants were interviewed in their homes every 3 months for up to 18 months between March 1987 and August 1989. Follow-up phone calls were completed in 1990, 1994, and 2008, primarily to ascertain disease outcomes.
Results: The provided data dictionary includes details of the over 500 variables measured in the study, which have been subsetted into domain datasets. Domains address physical, psychological, social, and behavioral status on the person with ALS and their partners. Missing data were coded according to their mechanism. Data are available in two formats: The person-level (wide) databases and the time-level (long) databases.
Discussion: The SALSPPD will provide a rich resource to scientists interested in the natural history of ALS, psychosocial effects on ALS outcomes and vice versa, and psychosocial and disease outcomes of treatments.
Document Type
Article
Publication Date
9-2024
Digital Object Identifier (DOI)
https://doi.org/10.1080/21642850.2024.2396137
Funding Information
The dataset used in this paper was collected by the Seattle ALS Patient Profile Project, an all-volunteer staff maintaining the rigor of a funded study. This research was funded in part by the University of Washington, The New Road Map Foundation, and Veterans Affairs, Seattle, Washington, USA. Preparation of the database was funded by the National Institute of Neurological Disorders and Stroke [R03-NS129748 to SCS].
Repository Citation
Segerstrom, Suzanne C. and Kasarskis, Edward J., "The Seattle Amyotrophic Lateral Sclerosis (ALS) Patient Project Database: observational, longitudinal, dyadic characterization of people with ALS and their partners" (2024). Neurology Faculty Publications. 110.
https://uknowledge.uky.edu/neurology_facpub/110
Included in
Behavioral Neurobiology Commons, Medicine and Health Commons, Neurology Commons, Psychiatry and Psychology Commons
Notes/Citation Information
© 2024 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group This is an Open Access article distributed under the terms of the Creative Commons Attribution-NonCommercial License (http:// creativecommons.org/licenses/by-nc/4.0/), which permits unrestricted non-commercial use, distribution, and reproduction in any medium, provided the original work is properly cited. The terms on which this article has been published allow the posting of the Accepted Manuscript in a repository by the author(s) or with their consent.