The ALS patient care database

Goals, design, and early results

R. G. Miller, F. A. Anderson, Walter G Bradley, B. R. Brooks, H. Mitsumoto, T. L. Munsat, S. P. Ringel

Research output: Contribution to journalArticle

69 Citations (Scopus)

Abstract

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.

Original languageEnglish
Pages (from-to)53-57
Number of pages5
JournalNeurology
Volume54
Issue number1
StatePublished - Jan 11 2000
Externally publishedYes

Fingerprint

Patient Care
Databases
Riluzole
Advance Directives
Quality of Health Care
Postal Service
North America
Spouses
Caregivers
Outcome Assessment (Health Care)
Clinical Trials
Physicians
Therapeutics
Neurologists

Keywords

  • ALS
  • Disease management
  • Disease registry
  • Health outcomes
  • Practice parameters
  • Quality of life

ASJC Scopus subject areas

  • Neuroscience(all)

Cite this

Miller, R. G., Anderson, F. A., Bradley, W. G., Brooks, B. R., Mitsumoto, H., Munsat, T. L., & Ringel, S. P. (2000). The ALS patient care database: Goals, design, and early results. Neurology, 54(1), 53-57.

The ALS patient care database : Goals, design, and early results. / Miller, R. G.; Anderson, F. A.; Bradley, Walter G; Brooks, B. R.; Mitsumoto, H.; Munsat, T. L.; Ringel, S. P.

In: Neurology, Vol. 54, No. 1, 11.01.2000, p. 53-57.

Research output: Contribution to journalArticle

Miller, RG, Anderson, FA, Bradley, WG, Brooks, BR, Mitsumoto, H, Munsat, TL & Ringel, SP 2000, 'The ALS patient care database: Goals, design, and early results', Neurology, vol. 54, no. 1, pp. 53-57.
Miller RG, Anderson FA, Bradley WG, Brooks BR, Mitsumoto H, Munsat TL et al. The ALS patient care database: Goals, design, and early results. Neurology. 2000 Jan 11;54(1):53-57.
Miller, R. G. ; Anderson, F. A. ; Bradley, Walter G ; Brooks, B. R. ; Mitsumoto, H. ; Munsat, T. L. ; Ringel, S. P. / The ALS patient care database : Goals, design, and early results. In: Neurology. 2000 ; Vol. 54, No. 1. pp. 53-57.
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