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New study tracks how DM1 affects chinese patients over time

NCT ID NCT06101940

Knowledge-focused Sponsor: Huashan Hospital 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 This study
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
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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 27, 2026 · Last updated Jun 27, 2026

Summary

This study follows 1000 Chinese patients with myotonic dystrophy type 1 (DM1) to understand how the disease affects multiple body systems and leads to disability. Researchers will collect health data and blood samples every 3 to 6 months for several years. The goal is to identify risk factors for serious outcomes like breathing problems or heart issues, and to build tools that help doctors manage the disease better.

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

About 1,000 people

The number the study aims to enrol. It can still change while the study runs.

Started

Aug 2021

Expected to finish

Dec 2035

An estimate. End dates often move.

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

Who can take part

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

Who is studied

The patients will be diagnosed and invited to join this trial in each participating neuromuscular diagnostic centers.

Ages

Children (under 18), adults (18 to 64) and older adults (65 and over)

Sex

Anyone

Healthy volunteers

Accepted

You do not need to have the condition being studied to take part.

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.

Inclusion Criteria: 1. Genetically confirmed DM1 (CTG repeat expansion in the 3' untranslated region of the DMPK gene). 2. Any sex. 3. Able to attend regular follow-up and willing to provide and store residual blood, urine, and other biospecimens for research. 4. Voluntary participation with signed informed consent (signed by legal guardian for minors). 5. Consent to use of routine clinical, examination, and follow-up data for research. Exclusion Criteria: 1. Unable to comply with study procedures. 2. Unable to provide informed consent, or guardian declines participation. 3. Pregnancy (for MRI safety). 4. Severe, unstable medical condition that precludes assessments.

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Conditions

The condition(s) this trial relates to.

myotonic dystrophy myotonic dystrophy type 1

As listed by the trial registrant

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

Myotonic dystrophy 1

How to take part

Only the study team decides who joins. These are the ways to reach them.

  1. The places running it

    22 sites. The list below names each one and where it is.

  2. The official record

    The full official record for this study. This one lists no contact details, but it is the first place any would appear.

    Open the record ↗

  3. A doctor treating you

    A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.

Contacts and locations

Locations

  • Chifeng Municipal Hospital

    Chifeng, Neimenggu, China

  • Children's Hospital of Fudan University

    Shanghai, Shanghai Municipality, China

  • Chinese People's Liberation Army General Hospital

    Beijing, Beijing Municipality, China

  • First Affiliated Hospital of Chongqing Medical University

    Chongqing, Chongqing Municipality, China

  • First Hospital of Shanxi Medical University

    Taiyuan, Shanxi, China

  • Fujian Medical University Union Hospital

    Fuzhou, Fujian, China

  • Huashan Hospital

    Shanghai, 200040, China

  • Peking University First Hospital

    Beijing, Beijing Municipality, China

  • Qilu Hospital of Shandong University

    Jinan, Shandong, China

  • Sichuan Provincial People's Hospital

    Chengdu, Sichuan, China

  • Southern Hospital of Southern Medical University

    Guangzhou, Guangdong, China

  • The First Affiliated Hospital of Nanchang University）

    Nanchang, Jiangxi, China

  • The First Affiliated Hospital of Soochow University

    Suzhou, Jiangsu, China

  • The First Bethune Hospital of Jilin University

    Changchun, Jilin, China

  • The First People's Hospital of Yancheng

    Yancheng, Jiangsu, China

  • The General Hospital of Western Theater Command

    Chengdu, Sichuan, China

  • The Third Hospital of Hebei Medical University

    Shijiazhuang, Hebei, China

  • Wuhan University People's Hospital

    Wuhan, Hubei, China

  • Xi'an Gaoxin Hospital

    Xi’an, Shanxi, China

  • Xi'an People's Hospital

    Xi’an, Shanxi, China

  • Yunnan Provincial People's Hospital

    Kunming, Yunnan, China

  • Zhongda Hospital Southeast University

    Nanjing, Jiangsu, China

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