About this trial
This is a prospective, observational, multicenter registry designed to collect comprehensive clinical, genetic, and outcome data from patients diagnosed with amyotrophic lateral sclerosis (ALS) across Thailand. The registry will establish a national dataset to describe epidemiology, clinical presentation, progression, and treatment outcomes, and will serve as a platform for future clinical and translational research.
Eligibility criteria
This trial does not accept healthy volunteersQualifiers
Diagnosis of ALS according to El Escorial or Gold Coast criteria
Age ≥ 18 years
Ability and willingness to provide informed consent
Disqualifiers
Patients unwilling to provide informed consent
Patients with alternative diagnoses mimicking ALS
Trial population
ALS patients attending university hospitals, tertiary neuromuscular clinics, and referral hospitals in Thailand.
Trial design
Cohort
Prospective
Treatments tested in this trial
Not listed
Trial groups
Trial outcomes
Primary outcomes
Survival
Time Frame: From enrollment until death from any cause (assessed continuously, with updates at each follow-up). Outcome: Overall survival in ALS patients across Thailand, with survival curves stratified by demographic, clinical, and genetic factors.
Secondary outcomes
ALS Functional Decline
Measure: Change in ALS Functional Rating Scale-Revised (ALSFRS-R) score. Time Frame: Every 6-12 months. Outcome: Rate of functional decline, expressed as points lost per month/year.
Disease Staging Progression
Measure: King's and MiToS staging systems, 9-point staging. Time Frame: Every 6-12 months. Outcome: Proportion of patients progressing to higher stages; median time to stage transitions.
Respiratory Outcomes
Measure: Forced vital capacity (FVC % predicted). Time Frame: Every 6-12 months. Outcome: Decline in FVC
Changes in health-related quality of life over time.
Measure: EQ-5D-5L. Time Frame: Annually. Outcome: Changes in health-related quality of life over time.
Sponsors and contacts
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