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Study reveals financial toll of duchenne MD on french families

NCT ID NCT06861270

Knowledge-focused Sponsor: Assistance Publique - Hôpitaux de Paris Source: ClinicalTrials.gov ↗

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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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 27, 2026 · Last updated Jun 27, 2026

Summary

This study looked at the extra costs that families of people with Duchenne muscular dystrophy (DMD) in France have to pay out of their own pockets. It included 28 patients of any age who had been diagnosed for at least six months. The researchers measured things like uninsured medical treatments, home modifications, and lost income from caregiving, to get a full picture of the financial burden on families.

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

28 people

The number who actually took part.

Started

Mar 2024

Finished

Jul 2025

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

This study will focus on patients with Duchenne muscular dystrophy, whatever their age, and included in the BNDMR. This database brings together data on all patients treated in the rare disease expert centres approved by the DGOS, and shows a gross total of 2,028 patients with DMD on 1st March 2022.

Ages

1 year to 99 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.

The patients identified are those present in the BNDMR and with an up-to-date address for their follow-up centre. Inclusion criteria * Patients of any age with DMD diagnosed more than 6 months ago; * Patient included in the BNDMR, not objecting to the collection of his or her data (see BNDMR 'Agreement to be contacted for a protocol') and alive at the time of his or her request to participate in the study. Exclusion Criteria: * Patient taking part in an interventional clinical study with changes to usual management (see BNDMR 'Patient taking part in a protocol'); * Patient and/or main carer objecting to the use of their data; * Patient and/or main carer whose understanding of the French language does not allow them to complete the questionnaire.

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Conditions

The condition(s) this trial relates to.

Duchenne muscular dystrophy

As listed by the trial registrant

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

Duchenne muscular dystrophy

Contacts and locations

Locations

  • AP-HP Hôtel Dieu

    Paris, 75004, France

More trials for these conditions

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