Curation of the Seattle ALS Patient

SUMMARY Data sharing allows new applications and hypotheses to be applied to existing data sets, honoring the individuals who contributed data and, often, public funding of the project that generated the data. Data sharing is particularly important for uncommon diseases such as amyotrophic lateral sclerosis (ALS). The Seattle ALS Patient Profile Database (SALSPPD) 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 psychological 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. In 2009, we were granted ownership of these data for our use, with the intention that the data would be made publicly available. However, the data are not in usable form. These are valuable data that include information on patient characteristics (e.g., medical and family history, patient-reported outcomes, disease outcomes, treatments), partner characteristics (e.g., partner-reported outcomes), family characteristics (e.g., family structure), and disease outcomes (e.g., forced vital capacity, survival). Under this proposal, the data would be formatted and validated (e.g., variable names and values, value labels and syntax); documented (data dictionary, missing data analysis, variable descriptive statistics); and the data and documentation made publicly available and their use promoted to scientists. Sharing 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.