A multi-center registration study of natural history and clinical characteristics of ALS in mainland China
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.
Study Type
OBSERVATIONAL
Enrollment
4,752
Peking University Third Hospital
Beijing, Beijing Municipality, China
RECRUITINGEffective Survival
The length of time from the date of diagnosis to patient death or tracheotomy or ventilator-assisted breathing.
Time frame: through study completion, an average of 3 month
Overall Survival
The length of time from the date of diagnosis to patient death due to any cause or the last confirmed survival.
Time frame: through study completion, an average of 3 month
Rate of disease progression
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.
Time frame: through study completion, an average of 3 month
Rate of Weight decline
The slope of decline of weight
Time frame: through study completion, an average of 3 month
Rate of BMI decline
The slope of decline of BMI
Time frame: through study completion, an average of 3 month
Rate of Forced Vital Capacity (FVC)
The slope of decline of Forced Vital Capacity (FVC) to assess the respiratory function.
Time frame: through study completion, an average of 3 month
This platform is for informational purposes only and does not constitute medical advice. Always consult a qualified healthcare professional.