The ALS Patient Care Database (ALS C.A.R.E) (1996-2005) was the first large-scale effort to track the disease course and outcomes of patients with amyotrophic lateral sclerosis. The project enrolled over 6000 patients from more than 300 clinical sites in the USA. Long-term follow-up was conducted through clinical assessment, patient self-reported questionnaires, and caregiver assessment. The ALS C.A.R.E. provided researchers and clinicians with the opportunity to gain insights into factors that may influence disease progression and to develop management plans that optimized patient function and quality of life. The database was endorsed by the World Federation of Neurology.

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  • Clinical Sites: 323
  • Physicians: 381
  • Patients: 6,337

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