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Massive french study aims to unlock secrets of rare MPS diseases

NCT ID NCT06036693

Knowledge-focused Sponsor: Institut National de la Santé Et de la Recherche Médicale, France Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now This study
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
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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 25, 2026 · Last updated Jun 27, 2026 · Updated 1 time

Summary

This observational study will follow up to 1,000 people in France with mucopolysaccharidosis (MPS), a group of rare genetic disorders. Researchers will collect medical data from patient records and ongoing checkups to map how the diseases progress and how current treatments affect symptoms. The goal is to improve future care and understanding of these conditions.

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 study could provide a clearer picture of how MPS diseases progress and how current treatments affect patients over the long term.
What could go wrong
This is an observational study, not a treatment trial. It will not test new therapies, and results may take years to gather and analyze.

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

Dec 2017

Expected to finish

Dec 2026

An estimate. End dates often move.

Lead sponsor

A government agency

The lead sponsor is a government body.

Who can take part

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

Who is studied

Prevalent and incident patients will be included in the cohort RaDiCo-MPS.

Ages

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

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.

Inclusion Criteria: * Confirmed diagnosis of MPS based on clinically relevant enzyme deficiency, with abnormally elevated GAG urinary excretion and/or identification of pathogenic mutations. * Signed informed consent or parents/guardian non-opposition for deceased patients (minor or protected major) There are no non-inclusion criteria.

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Conditions

The condition(s) this trial relates to.

Mucopolysaccharidosis I Mucopolysaccharidosis III Mucopolysaccharidosis IV mucopolysaccharidosis type 1 mucopolysaccharidosis type 2 mucopolysaccharidosis type 3 mucopolysaccharidosis type 4 mucopolysaccharidosis type 6 mucopolysaccharidosis type 7 mucopolysaccharidosis type 9 mucosulfatidosis

As listed by the trial registrant

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

Mucopolysaccharidosis I Mucopolysaccharidosis ii Mucopolysaccharidosis iii Mucopolysaccharidosis iv Mucopolysaccharidosis ix Mucopolysaccharidosis vi Mucopolysaccharidosis vii Multiple sulfatase deficiency disease

How to take part

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

  1. The places running it

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

  2. The official record

    ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.

    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

  • American Memorial Hospital

    NOT_YET_RECRUITING

    Reims, France

  • Centre Hospitalier Universitaire d'Angers

    RECRUITING

    Angers, France

  • Centre Hospitalier de Pau

    RECRUITING

    Pau, France

  • Clinique Monié

    NOT_YET_RECRUITING

    Toulouse, France

  • Hôpital Armand Trousseau

    RECRUITING

    Paris, France

  • Hôpital Beaujon

    RECRUITING

    Clichy, France

  • Hôpital Brabois

    RECRUITING

    Nancy, France

  • Hôpital Charles Nicolle

    NOT_YET_RECRUITING

    Rouen, France

  • Hôpital Clocheville

    RECRUITING

    Tours, France

  • Hôpital Gui de Chauliac

    RECRUITING

    Montpellier, France

  • Hôpital Jeanne de Flandre

    RECRUITING

    Lille, France

  • Hôpital Morvan

    RECRUITING

    Brest, France

  • Hôpital Necker-Enfants Malades

    RECRUITING

    Paris, France

  • Hôpital Pontchaillou

    RECRUITING

    Rennes, France

  • Hôpital Raymond-Poincaré

    NOT_YET_RECRUITING

    Garches, France

  • Hôpital Robert Debré

    RECRUITING

    Paris, France

  • Hôpital d'Estaing

    NOT_YET_RECRUITING

    Clermont-Ferrand, France

  • Hôpital de Hautepierre

    NOT_YET_RECRUITING

    Strasbourg, France

  • Hôpital de la Croix Saint-Simon

    NOT_YET_RECRUITING

    Paris, France

  • Hôpital de la Pitié-Salpêtrière

    RECRUITING

    Paris, France

  • Hôpital de la Timone

    RECRUITING

    Marseille, France

  • Hôpital des Enfants

    NOT_YET_RECRUITING

    Toulouse, France

  • Hôpital des Enfants - Groupe Hospitalier Pellegrin

    NOT_YET_RECRUITING

    Bordeaux, France

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