NCT05618379Active, not recruiting
Adult Spinal Muscular Atrophy (SMA) China Registry
Adult Patients With Spinal Muscular Atrophy in China: A Nationwide Registry
Source: ClinicalTrials.gov · Last updated 4 Aug 2026
Brief summary (registry, in English)
The primary objective of the study is to describe the natural history and utilization of disease modifying therapy (DMT) among adult Chinese participants with SMA linked to chromosome 5q (5q-SMA).
- Status (registry)
- Active, not recruiting
- Study type
- Observational
- Enrollment
- 200 (estimated)
- First submitted
- 20 Oct 2022
- Start date
- 6 Jan 2023
- Primary completion date
- 1 Jun 2028
- Lead sponsor
- Biogen
- Diseases
- Spinal muscular atrophy
- NCT number
- NCT05618379
What you commit to
- Study type: Observational
- Planned participants: 200
- From 6 Jan 2023 to the primary completion date, 1 Jun 2028
- 12 sites in 1 country
- Visits and tests: ask the trial team, the registry does not list them
Built from the registry fields of ClinicalTrials.gov. It describes the study, not your situation.
Who cannot take part
Copied verbatim from ClinicalTrials.gov and grouped by topic. Only the trial team decides who can take part.
Other
- -Other types of SMA (non 5q-SMA).
- NOTE: Other protocol defined Inclusion/Exclusion criteria may apply
Who the study is looking for
- -Genetically confirmed 5q-SMA.
Age in the registry: 18 years to - · Sex: All
Sites (12)
Sites in registry order. Pick your city on the disease page to sort them by distance.
| Site | City | Country | Site status |
|---|---|---|---|
| Peking Union Medical College Hospital Coordinator of this site? Confirm its status | Beijing | China | Unknown status |
| Xiangya Hospital of Central South University Coordinator of this site? Confirm its status | Changsha | China | Unknown status |
| West China Hospital，Sichuan University Coordinator of this site? Confirm its status | Chengdu | China | Unknown status |
| The First Affiliated Hospital of Fujian Medical University Coordinator of this site? Confirm its status | Fuzhou | China | Unknown status |
| The First Affiliated Hospital, Sun Yat-sen University Coordinator of this site? Confirm its status | Guangzhou | China | Unknown status |
| Qilu Hospital of Shandong University Coordinator of this site? Confirm its status | Jinan | China | Unknown status |
| The First People's Hospital of Yunnan Province Coordinator of this site? Confirm its status | Kunming | China | Unknown status |
| The First Affiliated Hospital of NanChang University Coordinator of this site? Confirm its status | Nanchang | China | Unknown status |
| Huashan Hospital, Fudan University Coordinator of this site? Confirm its status | Shanghai | China | Unknown status |
| Peking University Shenzhen Hospital Coordinator of this site? Confirm its status | Shenzhen | China | Unknown status |
| The Second Hospital of Hebei Medical University Coordinator of this site? Confirm its status | Shijiazhuang | China | Unknown status |
| The First Affiliated Hospital of Soochow University Coordinator of this site? Confirm its status | Suzhou | China | Unknown status |
Related publications
- Administration practice and adherence of nusinersen in adults with 5q-spinal muscular atrophy in China: an ambispective multicenter study.BMC Neurol · 2026 · PMID 41761140
- Effectiveness and Safety of Nusinersen Among Adults with 5q-Spinal Muscular Atrophy: A Multicenter Disease Registry in China.Adv Ther · 2026 · PMID 41461996
This page is information, not medical advice. Discuss any trial with your doctor.