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| ID | Type | Description | Link |
|---|---|---|---|
| 2022YFC3501303 | Other Grant/Funding Number | China's National Key R&D Program | |
| 82071410 | Other Grant/Funding Number | National Natural Science Foundation of China | |
| 82001335 | Other Grant/Funding Number | National Natural Science Foundation of China |
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| Name | Class |
|---|---|
| China Alliance for Rare Diseases | UNKNOWN |
| National Center for Neurological Disorders (China) | UNKNOWN |
| China myasthenia gravis collaborating group (CMGCG) | UNKNOWN |
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Myasthenia gravis (MG) is an autoimmune disease caused by dysfunction at the neuromuscular junction, characterized by partial or generalized skeletal muscle weakness and fatigability. The estimated annual incidence rate of MG in China is 0.68/100,000, with a high rate of relapse and poor treatment compliance. This study is a prospective, observational, multi-center patient registry across China. To support standardized management and follow-up of MG patients in China, a Cloud-based MG Patient Management Platform (CN MG Base) was established in September 2023 with the support of the Chinese Rare Diseases Alliance. The platform aims to collect longitudinal clinical data including demographic information, age of onset, medical history, comorbidities, medication usage, treatment responses, and others. It is intended to collect newly registered MG cases each year and follow up with these patients at one-year intervals for ten years
This study is a observational nationwide multicenter MG registry research. Starting from the baseline, annual follow-ups will be conducted to prospectively collect information on treatment medications, prognosis, and safety events. The following classification definitions can be applied: ① MG clinical subtypes (ocular, early-onset generalized, thymoma-related, late-onset generalized, MuSK-related, and seronegative); ② Different treatment methods (classic immunotherapy group, B-cell-targeted therapy, complement inhibition therapy, rapid-acting therapy, and IL-6 pathway inhibitors, etc.).
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Myasthenia gravis patients |
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| Measure | Description | Time Frame |
|---|---|---|
| MSE proportion | The proportion of patients achieving minimal symptom expression (MSE, defined as reaching an ADL score of 0 or 1) after treatment. | Ten years |
| Measure | Description | Time Frame |
|---|---|---|
| Safety events | Safety events including upper respiratory tract infection, lower respiratory tract infection, urinary tract infection, and other infections; | Ten years |
| Relapse of MG symptoms | Having reached MSE for over a year but experiencing a symptom relapse, manifested as an increase in ADL score greater than or equal to 2 points. |
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Inclusion Criteria:
To meet the eligibility criteria, at least one of the following additional criteria must be met:
Exclusion Criteria:
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MG patients mostly of Chinese Han ethnicity (ocular MG type no more than 30%).
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Sushan Luo, MD, PhD | Contact | 86 2152889999 | luosushan@fudan.edu.cn |
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| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Beijing Hospital | Recruiting | Beijing | Beijing Municipality | 100051 | China |
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| ID | Term |
|---|---|
| D009157 | Myasthenia Gravis |
| ID | Term |
|---|---|
| D020361 | Paraneoplastic Syndromes, Nervous System |
| D009423 | Nervous System Neoplasms |
| D009371 | Neoplasms by Site |
| D009369 | Neoplasms |
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Whole blood, Plasma, Serum, Blood RNA extraction
| Ten years |
| Xuanwu hospital, Capital medical university | Recruiting | Beijing | Beijing Municipality | 100053 | China |
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| Peking Union Medical College Hospital | Recruiting | Beijing | Beijing Municipality | 100730 | China |
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| The First Affiliated Hospital of Chongqing Medical University | Recruiting | Chongqing | Chongqing Municipality | 401147 | China |
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| The First Affiliated Hospital, Sun Yat-sen University | Recruiting | Guangzhou | Guangdong | 510060 | China |
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| The Third Hospital, Sun Yat-sen University | Recruiting | Guangzhou | Guangdong | 510060 | China |
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| First Affiliated Hospital of Zhengzhou University | Recruiting | Zhengzhou | Henan | 450052 | China |
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| Xiangya hospital, Central south university | Recruiting | Changsha | Hunan | 410001 | China |
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| The First Hospital, Soochow University | Recruiting | Suzhou | Jiangsu | 215005 | China |
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| Affiliated Hospital of Xuzhou Medical University | Recruiting | Xuzhou | Jiangsu | 221004 | China |
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| The First Affiliated Hospital of Nanchang University | Recruiting | Nanchang | Jiangxi | 330209 | China |
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| The First Hospital, Jilin University | Recruiting | Changchun | Jilin | 130021 | China |
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| Huashan Hospital, Fudan University | Recruiting | Shanghai | Shanghai Municipality | 200040 | China |
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| Tangdu Hospital, The Air Force Medical University | Recruiting | Xi’an | Shanxi | 710000 | China |
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| West China Hospital, Sichuan University | Recruiting | Chengdu | Sichuan | 610041 | China |
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| Tianjin Medical University General Hospital | Recruiting | Tianjin | Tianjin Municipality | 300052 | China |
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| D010257 | Paraneoplastic Syndromes |
| D020274 | Autoimmune Diseases of the Nervous System |
| D009422 | Nervous System Diseases |
| D019636 | Neurodegenerative Diseases |
| D020511 | Neuromuscular Junction Diseases |
| D009468 | Neuromuscular Diseases |
| D001327 | Autoimmune Diseases |
| D007154 | Immune System Diseases |