Can a nationwide registry unlock the secrets of adult spinal muscular atrophy?

NCT ID NCT05618379

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

First seen Aug 04, 2026 · Last updated Aug 05, 2026 · Updated 1 time

Summary

This study is a nationwide registry in China that will follow adults with a genetic form of spinal muscular atrophy (SMA). The goal is to describe how the disease naturally progresses over time and how disease-modifying treatments are used in real-world settings. By collecting data from 200 participants, researchers hope to gain a clearer picture of the condition in adults, which may help improve future care and treatment strategies.

What this could mean

Our plain-language read of the trial. This is informational only — not medical advice or a prediction.

What this could lead to: This registry could help doctors better understand how spinal muscular atrophy progresses in adults and how treatments are used in real life, potentially leading to improved care and support strategies.
What could go wrong: As an observational registry, it does not test a new treatment, so it won't directly lead to a cure. The findings may also be specific to the Chinese population and may not apply to other regions.

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

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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

Huashan Hospital, Fudan University

Shanghai, Shanghai Municipality, 200040, China
Peking Union Medical College Hospital

Beijing, Beijing Municipality, 100730, China
Peking University Shenzhen Hospital

Shenzhen, Guangdong, 518000, China
Qilu Hospital of Shandong University

Jinan, Shandong, 250012, China
The First Affiliated Hospital of Fujian Medical University

Fuzhou, Fujian, 350005, China
The First Affiliated Hospital of Nanchang University

Nanchang, Jiangxi, 330006, China
The First Affiliated Hospital of Soochow University

Suzhou, Jiangsu, 215006, China
The First Affiliated Hospital, Sun Yat-sen University

Guangzhou, Guangdong, 510080, China
The First People's Hospital of Yunnan Province

Kunming, Yun'nan, 650032, China
The Second Hospital of Hebei Medical University

Shijiazhuang, Hebei, 050000, China
West China Hospital, Sichuan University

Chengdu, Sichuan, 610041, China
Xiangya Hospital of Central South University

Changsha, Hunan, 410008, China

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