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Hidden danger: muscle disease linked to deadly clots

NCT ID NCT03424460

Knowledge-focused Sponsor: Assistance Publique - Hôpitaux de Paris 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
Running, but no longer taking on new participants.
Completed This study
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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 Jun 26, 2026 · Updated 1 time

Summary

This study investigates why people with myotonic dystrophy type 1 are 10 times more likely to develop dangerous blood clots in the legs or lungs. Researchers will compare blood samples from 130 participants—including patients with the disease, those with a history of clots, and healthy volunteers—to look for clotting abnormalities. The goal is to understand the cause, which could lead to better prevention 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
If successful, this research could point toward ways to prevent life-threatening blood clots in people with myotonic dystrophy type 1.
What could go wrong
This is an observational study, not a treatment trial. It may not lead directly to new therapies, and the findings might not apply to all patients.

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.

Phase

Not a phased trial

Phase numbers describe drug development. The registry uses this when they do not apply, as it does for trials of devices, procedures or behaviour changes, and for observational studies.

Participants

130 people

The number who actually took part.

Started

Jun 2018

Finished

Mar 2023

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.

Ages

18 years and older

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. Population N°1 * Age over 18 years * Patient living in France and with medical insurance * Patient having given his informed and written consent * DM1 groups: genetically proven DM1 * VTE groups: at least 1 history of VTE (PE and/or DVT) * Healthy volunteers: patient without any medical history (no DM1, no VTE, no thrombophilia), and without taking any anti-thrombotic medication 2. Population N°2 * Liver tissue of patients with genetically proven DM1 (tissue bank) * Liver tissue of patients without DM1 or any history of VTE (tissue bank) Exclusion Criteria: * Patient opposed to data collection and analysis 1\. Population N°1 * Genetically proven thrombophilia * Anti-thrombotic medication * Hemoglobin levels \< 7 g/dL * Hemoglobin levels \< 9 g/dL in case of cardiac of respiratory condition 2\. Population N°2 * Liver tissue quality insufficient for RNA extraction and analysis

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Conditions

The condition(s) this trial relates to.

myotonic dystrophy myotonic dystrophy type 1 pulmonary embolism thrombophilia venous thromboembolism Venous Thrombosis

As listed by the trial registrant

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

Myotonic dystrophy 1

Contacts and locations

Locations

  • Service de Cardiologie - Hôpital Cochin

    Paris, Île-de-France Region, 75014, France

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