The ALS patient care database: goals, design, and early results. ALS C.A.R.E. Study Group.
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.
Miller
R G
RG
California Pacific Medical Center, San Francisco 94115, USA. miller@itsa.ucsf.edu
Anderson
F A
FA
Bradley
W G
WG
Brooks
B R
BR
Mitsumoto
H
H
Munsat
T L
TL
Ringel
S P
SP
D000203:Activities of Daily Living; D000328:Adult; D000368:Aged; D000690:Amyotrophic Lateral Sclerosis / Q000188:drug therapy / Q000503:physiopathology / Q000628:therapy*; D017028:Caregivers / Q000523:psychology; D019992:Databases as Topic; D005260:Female; D006040:Goals; D006801:Humans; D008297:Male; D008875:Middle Aged; D010353:Patient Education as Topic; D017060:Patient Satisfaction; D026741:Physical Therapy Modalities; D011788:Quality of Life; D013727:Terminal Care