Seattle ALS Patient Profile Database (SALSPPD)
Description
The Seattle Amyotrophic Lateral Sclerosis (ALS) Patient Profile Database is a rich longitudinal dataset of ALS patients (n = 143) and their partners (spouses, significant others, or caregivers; n = 123) from clinics in Seattle, WA; San Francisco, CA; and Philadelphia, PA. The purpose of the study was to characterize the psychosocial and physical natural history of ALS and the interactions between them. 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 patient outcomes. See ReadMe file for information on usage of the database. Data include information on both exposures and outcomes. See Data Dictionary for full listing. Domain Contents Examples ALS ALS Severity Scale Scores lower extremities, upper extremities BHX Behavioral History alcohol and tobacco use COG Social Cognition attitudes, beliefs, personality from informant DDV Disease Devices feeding tube, respirator DEM Demographics age, education DHX Disease History symptom onsets, forced vital capacity DTX Disease Treatments providers, treatments FAM Family Structure marital status, number of children FHX Family History neurological diseases, cancer, CVD MHX Medical History infections, hospitalizations, surgeries OUT Outcomes vital status PPF Psychiatric and Psychological Functions appraisals, coping PSY Psychological Health anger, depression, body appraisal SRA Social Role Activity hours in different activities, social roles SSP Social Support support group attendance, social support STU Study Variables completion, time to visits, study site
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Funding
U.S. Department of Veterans Affairs
National Institute of Neurological Disorders and Stroke
R03-NS128748
University of Washington