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dc.contributor.authorMiller, Robert G.
dc.contributor.authorAnderson, Frederick A. Jr.
dc.contributor.authorBradley, W. G.
dc.contributor.authorBrooks, B. R.
dc.contributor.authorMitsumoto, H.
dc.contributor.authorMunsat, T. L.
dc.contributor.authorRingel, S. P.
dc.date2022-08-11T08:08:08.000
dc.date.accessioned2022-08-23T15:43:29Z
dc.date.available2022-08-23T15:43:29Z
dc.date.issued2000-01-15
dc.date.submitted2011-09-16
dc.identifier.citation<p>Neurology. 2000 Jan 11;54(1):53-7.</p>
dc.identifier.issn0028-3878 (Linking)
dc.identifier.pmid10636125
dc.identifier.urihttp://hdl.handle.net/20.500.14038/27107
dc.description.abstractOBJECTIVE: 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.
dc.language.isoen_US
dc.relation<p><a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&list_uids=10636125&dopt=Abstract">Link to Article in PubMed</a></p>
dc.relation.urlhttps://insights.ovid.com/neurology/neur/2000/01/110/als-patient-care-database-goals-design-early/16/00006114
dc.subjectActivities of Daily Living
dc.subjectAdult
dc.subjectAged
dc.subjectAmyotrophic Lateral Sclerosis
dc.subjectCaregivers
dc.subject*Databases as Topic
dc.subjectFemale
dc.subjectGoals
dc.subjectHumans
dc.subjectMale
dc.subjectMiddle Aged
dc.subjectPatient Education as Topic
dc.subjectPatient Satisfaction
dc.subjectPhysical Therapy Modalities
dc.subjectQuality of Life
dc.subjectTerminal Care
dc.subjectHealth Information Technology
dc.subjectHealth Services Administration
dc.subjectHealth Services Research
dc.subjectNervous System Diseases
dc.subjectNutritional and Metabolic Diseases
dc.titleThe ALS patient care database: goals, design, and early results. ALS C.A.R.E. Study Group
dc.typeJournal Article
dc.source.journaltitleNeurology
dc.source.volume54
dc.source.issue1
dc.identifier.legacycoverpagehttps://escholarship.umassmed.edu/cor_als/9
dc.identifier.contextkey2241842
html.description.abstract<p>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.</p> <p>BACKGROUND: Substantial variations exist in managing ALS, but there has been no North American database to measure outcomes in ALS until now.</p> <p>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.</p> <p>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.</p> <p>CONCLUSIONS: The ALS Patient Care Database appears to provide valuable data on physician practices and patient-focused outcomes in ALS.</p>
dc.identifier.submissionpathcor_als/9
dc.contributor.departmentCenter for Outcomes Research
dc.source.pages53-7


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