Amyotrophic Lateral Sclerosis Registry in Thailand

Trial statusRecruiting
Trial phaseNot listed
Trial typeObservational
Biological sexAll
AgeNot listed
SponsorChulalongkorn University

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 volunteers

Qualifiers

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

Design model

Cohort

Time perspective

Prospective

Treatments tested in this trial

Not listed

Trial groups

No trial groups listed

Trial outcomes

Primary outcomes

1

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.

Time frame
10 years

Secondary outcomes

1

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.

Time frame
10 years
2

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.

Time frame
10 years
3

Respiratory Outcomes

Measure: Forced vital capacity (FVC % predicted). Time Frame: Every 6-12 months. Outcome: Decline in FVC

Time frame
10 years
4

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.

Time frame
10 years

Other outcomes

Sponsors and contacts

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