A multi-center registration study of clinical characteristics of amyotrophic lateral sclerosis (ALS) patients with traditional Chinese medicine (TCM).
The CARE-TCM is a prospective, multi-center, patient registry study. Eligible ALS patients with TCM treatments will be enrolled in the registry. After enrollment, this research collects the individual characteristics of patients' status. Longitudinal follow-up data are collected from both patients (primary caregivers) and their treating neurologists every 3 months for 5 years. The aims of the CARE-TCM are to: 1) explore the general characteristics of ALS patients with TCM and; 2) assess the effectiveness and safety of various TCMs on ALS based on nationwide registry outcome collecting process.
Study Type
OBSERVATIONAL
Enrollment
2,000
Dongzhimen Hospital, Beijing University of Chinese Medicine
Beijing, China
RECRUITINGEffective Survival
The time from disease onset to death, tracheostomy, or permanent assisted ventilation
Time frame: Through study completion, an average of 3 months
Overall Survival
Death owing to any causes
Time frame: Through study completion, an average of 3 months
Rate of Disease Progression
(48-total ALSFRS-R)/symptom duration (months)
Time frame: Through study completion, an average of 3 months
Rate of Forced Vital Capacity (FVC) Decline
The slope of decline of forced vital capacity (FVC) to assess the respiratory function.
Time frame: through study completion, an average of 3 months
Rate of Body Mass Index (BMI) Decline
The slope of decline of body mass index (BMI) to assess the disease progression.
Time frame: Through study completion, an average of 3 months
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