Myasthenia Gravis Registry in China
Key facts
- Where
- Beijing, Changchun, Changsha, Chengdu, Chongqing, Guangzhou, Nanchang, Shanghai, Suzhou, Tianjin, Xi’an, Xuzhou, and Zhengzhou, ChinaSee the 16 sites
Where in China
- Beijing HospitalBeijing, ChinaTaking people
- Peking Union Medical College HospitalBeijing, ChinaTaking people
- Xuanwu Hospital, Capital Medical UniversityBeijing, ChinaTaking people
- The First Hospital, Jilin UniversityChangchun, ChinaTaking people
- Xiangya Hospital Central South UniversityChangsha, ChinaTaking people
- West China Hospital，Sichuan UniversityChengdu, ChinaTaking people
- The First Affiliated Hospital of Chongqing Medical UniversityChongqing, ChinaTaking people
- The First Affiliated Hospital, Sun Yat-sen UniversityGuangzhou, ChinaTaking people
- The Third Hospital, Sun Yat-sen UniversityGuangzhou, ChinaTaking people
- The First Affiliated Hospital of NanChang UniversityNanchang, ChinaTaking people
- Huashan Hospital, Fudan UniversityShanghai, ChinaTaking people
- The First Hospital, Soochow UniversitySuzhou, ChinaTaking people
- Tianjin Medical University General HospitalTianjin, ChinaTaking people
- Tangdu Hospital, The Air Force Medical UniversityXi’an, ChinaTaking people
- Affiliated Hospital of Xuzhou Medical UniversityXuzhou, ChinaTaking people
- First Affiliated Hospital of Zhengzhou UniversityZhengzhou, ChinaTaking people
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Trial details
- Who runs it
- Huashan Hospital
- Trial code
- NCT06241521
- Record updated
- 5 February 2024
- Original description
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 yearsRead full original descriptionShow less
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
Inclusion: Fluctuating weakness in skeletal muscles, such as extraocular, bulbar, limb muscles, etc.. Demonstrating fluctuation and fatigability: Weakness is usually worse in the morning and improves with rest; worsens with sustained activity; Patients themselves or their guardians can understand and sign the informed consent form; To meet the eligibility criteria, at least one of the following additional criteria must be met:; a. Positive Tensilon test; b. Decrease in compound muscle action potential by more than 10% with low-frequency repetitive nerve stimulation or widening of the "jitter" (the variability in time of the second action potential relative to the first) on single-fiber electromyography, with or without blocking; c. Positive antibodies: Serum testing positive for AChR antibodies, MuSK antibodies, or LRP4 antibodies.
Exclusion: Patients with mental illness who cannot cooperate; Patients with multiple organ dysfunction or in extremely critical condition, unable to complete relevant medical history collection or evaluation.