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The ALS Patient Care Database

Goals, design, and early results

From the California Pacific Medical Center (Dr. Miller), San Francisco, CA; The Center for Outcomes Research (Dr. Anderson), University of Massachusetts Medical School, Worcester, MA; The University of Miami (Dr. Bradley), School of Medicine, FL; The University of Wisconsin Hospital & Clinics (Dr. Brooks), Madison, WI; The Cleveland Clinic Foundation (Dr. Mitsumoto), Cleveland, OH; The New England Medical Center (Dr. Munsat), Boston, MA; and the University of Colorado School of Medicine (Dr. Ringel), Denver, CO.

Address correspondence and reprint requests to Dr. Robert G. Miller, California Pacific Medical Center, 2324 Sacramento Street, Suite 150, San Francisco, CA 94115; e-mail: miller{at}itsa.ucsf.edu

OBJECTIVE: The ALS Patient Care Database was created to improve the quality of care for patients with ALS by 1) providing neurologists with data to evaluate and improve their practices, 2) publishing data on temporal trends in the care of patients with ALS, and 3) developing hypotheses to be tested during formal clinical trials.

BACKGROUND: Substantial variations exist in managing ALS, but there has been no North American database to measure outcomes in ALS until now.

METHODS: This observational database is open to all neurologists practicing in North America, who are encouraged to enroll both incident and prevalent ALS patients. Longitudinal data are collected at intervals of 3 to 6 months by using standard data collection instruments. Forms are submitted to a central data coordinating center, which mails quarterly reports to participating neurologists.

RESULTS: Beginning in September 1996 through November 30, 1998, 1,857 patients were enrolled at 83 clinical sites. On enrollment, patients had a mean age of 58.6 years ± 12.9 (SD) years (range, 20.1 to 95.1 years), 92% were white, and 61% were men. The mean interval between onset of symptoms and diagnosis was 1.2 ± 1.6 years (range, 0 to 31.9 years). Riluzole was the most frequently used disease-specific therapy (48%). Physical therapy was the most common nonpharmacologic intervention (45%). The primary caregiver was generally the spouse (77%). Advance directives were in place at the time of death for 70% of 213 enrolled patients who were reported to have died.

CONCLUSIONS: The ALS Patient Care Database appears to provide valuable data on physician practices and patient-focused outcomes in ALS.

Key words: ALS—Health outcomes—Disease management—Disease registry—Quality of life—Practice parameters

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