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New registry tracks SMA in chinese kids to unlock Real-World insights

NCT ID NCT05042921

Knowledge-focused Sponsor: Biogen Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing This study
Running, but no longer taking on new participants.
Completed
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Jun 26, 2026 · Last updated Sep 11, 2026 · Updated 1 time

Summary

This study is a registry that collects information on up to 600 children in China with spinal muscular atrophy (SMA). It aims to describe how the disease progresses and how treatments are used in everyday medical practice. The study does not test a new drug but gathers data to better understand SMA and its management.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

600 people

The number who actually took part.

Started

Nov 2021

Expected to finish

Sep 2027

An estimate. End dates often move.

Lead sponsor

A company

The lead sponsor is a pharmaceutical, biotech, or medical-device company.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

Pediatric participants with 5q-SMA will be enrolled to obtain information on both the natural history of the disease and effectiveness and safety of DMTs.

Ages

Up to 18 years

Sex

Anyone

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

Key Inclusion Criteria: * Ability of the participant and/or his/her legally authorized representative (e.g., parent or legal guardian), as appropriate and applicable, to understand the purpose and risks of the study, to provide informed consent, and to authorize the use of confidential health information in accordance with national and local privacy regulations. * Genetically confirmed 5q-SMA. * Age \< 18 years at enrollment. Key Exclusion Criteria: * Unable or unwilling to provide informed consent. * Other types of SMA (non 5q-SMA). NOTE: Other protocol defined inclusion/ exclusion criteria may apply.

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Conditions

The condition(s) this trial relates to.

spinal muscular atrophy

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Muscular atrophy, spinal

Contacts and locations

Locations

  • Anhui Children's Hospital

    Hefei, Anhui, 230006, China

  • Beijing Children's Hospital, Capital Medical University

    Beijing, Beijing Municipality, 100045, China

  • Children's Hospital Affiliated to Shandong University

    Jinan, Jinan Shandong, 250022, China

  • Children's Hospital of Chongqing Medical University

    Chongqing, Chongqing Municipality, 400014, China

  • Children's Hospital of Fudan University

    Shanghai, Shanghai Municipality, 201102, China

  • Dalian Women and Children's Medical Group

    Dalian, Liaoning, 116037, China

  • Fujian Medical University Union Hospital

    Fuzhou, Fujian, 350001, China

  • Hunan Children's Hospital

    Changsha, Hu'nan, 410007, China

  • Jiangxi Provincial Children's Hospital

    Nanchang, Jiangxi, 330006, China

  • Maternity and Child Health Care of Guangxi Zhuang Autonomous Region

    Nanning, Guangxi Zhuang, 530002, China

  • People's Hospital of Ningxia Hui Autonomous Region

    Yinchuan, Ningxia Hui, 750002, China

  • Shengjing Hospital of China Medical University

    Shenyang, Liaoning, 110022, China

  • Shenzhen Children's Hospital

    Shenzhen, Guangdong, 518026, China

  • The Affiliated Hospital of Inner Mongolia Medical University

    Hohhot, Inner Mongolia, 010050, China

  • The Children's Hospital, Zhejiang University School of Medicine

    Hangzhou, Zhejiang, 310052, China

  • The First Affiliated Hospital, Sun Yat-sen University

    Guangzhou, Guangdong, 510080, China

  • The First Hospital of Jilin University

    Changchun, Jilin, 130021, China

  • The Second Affiliated Hospital of Xi'An Jiaotong University

    Xi’an, Shanxi, 710004, China

  • The Second Hospital of Hebei Medical University

    Shijiazhuang, Hebei, 050000, China

  • The Third Affiliated Hospital of Zhengzhou University

    Zhengzhou, Henan, 450052, China

  • West China Second University Hospital, Sichuan University

    Chengdu, Sichuan, 610041, China

  • Wuhan Children's Hospital, Tongji Medical College Huazhong University of Science & Technology

    Wuhan, Hubei, 430010, China

  • Xiamen Maternal and Child Health Hospital

    Xiamen, Fujian, 361003, China

  • Xiangya Hospital, Central South University

    Changsha, Hu'nan, 410008, China

  • Xuzhou Central Hospital

    Xuzhou, Jiangsu, 221009, China

More trials for these conditions

Other studies related to the condition(s) this trial covers.