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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.
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| Measure | Description | Time Frame |
|---|---|---|
| Effective Survival | The length of time from the date of diagnosis to patient death or tracheotomy or ventilator-assisted breathing. | through study completion, an average of 3 month |
| Measure | Description | Time Frame |
|---|---|---|
| Overall Survival | The length of time from the date of diagnosis to patient death due to any cause or the last confirmed survival. | through study completion, an average of 3 month |
| Rate of disease progression |
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Inclusion Criteria:
Exclusion Criteria:
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Patients who meet the criteria will be enrolled from multi-centers in mainland China.
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Dongsheng Fan, MD, PhD | Contact | +86-15611908107 | dsfan@sina.com |
| Name | Affiliation | Role |
|---|---|---|
| Dongsheng Fan, MD, PhD | Peking University Third Hospital | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Peking University Third Hospital | Recruiting | Beijing | Beijing Municipality | 100191 | China |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 33277290 | Derived | He J, Fu JY, Chen L, He J, Dang J, Zou Z, Ma S, Li N, Fan D. Multicentre, prospective registry study of amyotrophic lateral sclerosis in mainland China (CHALSR): study protocol. BMJ Open. 2020 Dec 4;10(12):e042603. doi: 10.1136/bmjopen-2020-042603. |
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| ID | Term |
|---|---|
| D000690 | Amyotrophic Lateral Sclerosis |
| ID | Term |
|---|---|
| D013118 | Spinal Cord Diseases |
| D002493 | Central Nervous System Diseases |
| D009422 | Nervous System Diseases |
| D016472 | Motor Neuron Disease |
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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.
| through study completion, an average of 3 month |
| Rate of Weight decline | The slope of decline of weight | through study completion, an average of 3 month |
| Rate of BMI decline | The slope of decline of BMI | 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. | through study completion, an average of 3 month |
| D019636 | Neurodegenerative Diseases |
| D057177 | TDP-43 Proteinopathies |
| D009468 | Neuromuscular Diseases |
| D057165 | Proteostasis Deficiencies |
| D008659 | Metabolic Diseases |
| D009750 | Nutritional and Metabolic Diseases |