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13,000 patients join quest to unlock mysteries of rare mast cell diseases

NCT ID NCT06186856

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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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

Summary

This study will collect health information from 13,000 children and adults with mast cell disorders across 20 French medical centers. Researchers want to learn how common these diseases are, how they progress, and what symptoms patients have. The goal is to improve diagnosis and care for these rare 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 could lead to better diagnosis and care guidelines for mast cell disorders in France.
What could go wrong
This is an observational study, not a treatment trial, so it won't directly help participants. Results may take years and might not apply outside France.

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 13,000 people

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

Started

Nov 2024

Expected to finish

Dec 2038

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

Patient with mast cell diseases, managed in France in a rare disease reference center CEREMAST. 13000 pateints estimated.

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: 1. Children from birth and adults of any age 2. With one of the following mast cell diseases: * Mastocytoses (cutaneous, systemic and sarcomas) Defined according to the WHO 2016 classification * Mast cell activation syndromes (idiopathic, secondary and clonal) * Other mast cell activation disorders (MCAD-NOS), Defined according to the Vienna classification * Pre-mastocytosis or MMC (1 to 2 criteria according to WHO 2016 classification). 3. Managed in France in a rare disease reference, constitutive or competence center (CEREMAST) with DGOS labelization. Exclusion Criteria: 1\. Opposition of the patient or his/her parents to participation in the study.

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Conditions

The condition(s) this trial relates to.

Mast Cell Activation Disorders mast cell activation syndrome mastocytosis

As listed by the trial registrant

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

Mast cell disorder

How to take part

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

  1. The places running it

    21 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

  • CHU - Poitiers

    RECRUITING

    Poitiers, France

  • CHU AMIENS site sud

    RECRUITING

    Amiens, France

  • CHU Grenoble

    RECRUITING

    Grenoble, 38700, France

  • CHU Purpan

    RECRUITING

    Toulouse, 40031, France

  • CHU Réunion sud - Saint Pierre

    RECRUITING

    Saint-Pierre, 97448, France

  • CHU de Montpellier

    RECRUITING

    Montpellier, 34090, France

  • CHU de NANCY

    RECRUITING

    Nancy, 54035, France

  • CHU de TOURS

    RECRUITING

    Tours, 37000, France

  • Chru - Strasbourg

    RECRUITING

    Strasbourg, 67200, France

  • Chru Lille

    RECRUITING

    Lille, 59037, France

  • Chu - Besancon

    RECRUITING

    Besançon, 25000, France

  • Chu - Caen

    RECRUITING

    Caen, 14033, France

  • Chu - Clermont Ferrand

    RECRUITING

    Clermont-Ferrand, France

  • Chu - La Timone - Marseille

    RECRUITING

    Marseille, 13005, France

  • Chu - Limoges

    RECRUITING

    Limoges, 87000, France

  • Chu - Nantes

    RECRUITING

    Nantes, 44000, France

  • Chu - Rennes

    RECRUITING

    Rennes, 35000, France

  • Chu Angers

    RECRUITING

    Angers, 49100, France

  • Hospices Civils de Lyon

    RECRUITING

    Lyon, France

  • Hôpital Necker-Enfants malades

    RECRUITING

    Paris, 75015, France

  • Hôpital Universitaire Pitié Salpetrière

    RECRUITING

    Paris, 75013, France