Registration Study of Amyotrophic Lateral Sclerosis (ALS) in Mainland China (ChALSR)
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A multi-center registration study of natural history and clinical characteristics of ALS in mainland China
Condition or disease
Amyotrophic Lateral Sclerosis
Amyotrophic lateral sclerosis (ALS) is a rapidly progressive neurodegenerative disease of unknown etiology that is currently incurable. This study is a national multi-center registration study. The study collects general information of ALS patients including medical history, disease characteristics, clinical treatment data, and patient information for different visits in different centers. The aim of the study is: a) describe the distribution of ALS in mainland China(explore the differences in the number of ALS at different times, different regions, and different populations) and further find the reasons that affect the distribution of ALS, b) study the development of ALS in mainland China and the corresponding changes in the characteristics of the disease, c) explore factors that influence the prognosis of ALS.
Effective Survival [ Time Frame: through study completion, an average of 3 month ]
The length of time from the date of diagnosis to patient death or tracheotomy or ventilator-assisted breathing.
Secondary Outcome Measures :
Overall Survival [ Time Frame: through study completion, an average of 3 month ]
The length of time from the date of diagnosis to patient death due to any cause or the last confirmed survival.
Rate of disease progression [ Time Frame: through study completion, an average of 3 month ]
The slope of decline of the ALS Functional Rating Scale-Revised (ALSFRS-R) score from the diagnosis time to the follow-up time. ALSFRS-R values from 0 to 48 and it implies better outcome when it is higher.
Rate of Weight decline [ Time Frame: through study completion, an average of 3 month ]
The slope of decline of weight
Rate of BMI decline [ Time Frame: through study completion, an average of 3 month ]
The slope of decline of BMI
Rate of Forced Vital Capacity (FVC) [ Time Frame: through study completion, an average of 3 month ]
The slope of decline of Forced Vital Capacity (FVC) to assess the respiratory function.
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Layout table for eligibility information
Ages Eligible for Study:
18 Years to 80 Years (Adult, Older Adult)
Sexes Eligible for Study:
Accepts Healthy Volunteers:
Patients who meet the criteria will be enrolled from multi-centers in mainland China.
Clinical diagnosis of laboratory-supported probable, probable, or definite ALS according to EI Escorial diagnostic criteria
Age: 18-70 years
Refuse to cooperate or reject the informed consent