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French launch largest study of rare tumor disease

NCT ID NCT02867033

Knowledge-focused Sponsor: Centre Oscar Lambret 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 This study
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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 aims to create the largest French database of people diagnosed with aggressive fibromatosis, a rare tumor that grows in connective tissue. Researchers will collect tissue samples, medical history, and genetic information from 628 participants across France. The goal is to better understand the disease and its links to other conditions like familial adenomatous polyposis.

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 improve understanding of aggressive fibromatosis and guide future treatment strategies.
What could go wrong
This is an observational study, not a treatment trial. It will not directly test any new therapy, so benefits for patients are indirect and long-term.

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

628 people

The number who actually took part.

Started

Mar 2016

Expected to finish

Nov 2030

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.

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: * Incident Case of aggressive fibromatosis in France, diagnosed after 01/01/2016 * Confirmed diagnosis by the French anatomopathological diagnosis network (including search for mutation of the β-Catenin Gene, CTNNB1) * Affiliation to the National Health System * Informed consent signed (both parents signature for non adult patients) Exclusion Criteria: * Administrative or legal measure of liberty privation * Patient not able to give consent or unwilling to provide consent

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Conditions

The condition(s) this trial relates to.

desmoid tumor

As listed by the trial registrant

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

Aggressive fibromatosis

Contacts and locations

Locations

  • CHU Angers

    Angers, 49933, France

  • CHU Saint-Étienne - Hôpital Nord

    Saint-Etienne, 42055, France

  • CHU Toulouse - Hôpital des Enfants

    Toulouse, 31059, France

  • CHU Tours - Clocheville

    Tours, 37044, France

  • CHU de Besançon

    Besançon, 25030, France

  • CHU de Caen-Côte de Nacre

    Caen, 14033, France

  • CHU de Grenoble- Hôpital Couple Enfant

    Grenoble, 38043, France

  • CHU de Reims

    Reims, 51100, France

  • CHU de Rennes- Hôpital Sud

    Rennes, 35023, France

  • Centre François Baclesse

    Caen, 14076, France

  • Centre Georges François Leclerc

    Dijon, 21079, France

  • Centre Henri Becquerel

    Rouen, 76038, France

  • Centre Jean Perrin

    Clermont-Ferrand, 63011, France

  • Centre Léon Bérard

    Lyon, 69373, France

  • Centre Oscar Lambret

    Lille, 59020, France

  • Hôpital Archet 2

    Nice, 06202, France

  • Hôpital Cochin

    Paris, 75014, France

  • Hôpital Mère Enfant - CHU Nantes

    Nantes, 44093, France

  • Hôpital Privé de la Loire

    Saint-Etienne, 42100, France

  • Hôpital Saint Antoine

    Paris, France

  • Hôpital Saint Louis

    Paris, 75010, France

  • Hôpital d'Enfants- CHU Nancy

    Vandœuvre-lès-Nancy, 54511, France

  • Hôpital des Enfants

    Bordeaux, 33076, France

  • Hôpital la Timone Enfants Service Oncologie Pédiatrique

    Marseille, 13005, France

  • Hôpital la Timone Service Oncologie Médicale

    Marseille, 13005, France

  • Hôpitaux Universitaires de Strasbourg

    Strasbourg, 67098, France

  • Hôpîtal d'Enfants Armand Trousseau

    Paris, 75012, France

  • ICM Val d'Aurelle

    Montpellier, 34298, France

  • Institut Bergonié

    Bordeaux, 33076, France

  • Institut Claudius Régaud

    Toulouse, 31059, France

  • Institut Curie Département Oncologie Médicale

    Paris, 75005, France

  • Institut Curie Département Oncologie Pédiatrique

    Paris, 75005, France

  • Institut Curie-Hôpital René Huguenin

    Saint-Cloud, 92210, France

  • Institut Gustave Roussy

    Villejuif, 94800, France

  • Institut Paoli Calmettes

    Marseille, 13273, France

  • Institut de Cancérologie de Lorraine

    Vandœuvre-lès-Nancy, 54519, France

  • Institut de Cancérologie de l'Ouest - Paul Papin

    Angers, 49055, France

  • Institut de Cancérologie de l'Ouest - Site René Gauducheau

    Saint-Herblain, 44805, France

  • Institut de Cancérologie et d'Hématologie Universitaire de Saint Etienne

    Saint-Priest-en-Jarez, France

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