Seattle ALS Patient Profile Database (SALSPPD)

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