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New study tracks cancer risk in rare genetic condition

NCT ID NCT05630105

Knowledge-focused Sponsor: Institut Bergonié 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 This study
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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 follows 430 people with Cowden's disease (a PTEN gene mutation) to better understand their risk of developing cancer. Researchers will track how many participants get cancer over time. The goal is to improve monitoring and care for this high-risk group.

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 430 people

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

Started

Jun 2023

Expected to finish

Jan 2048

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

National observational cohort of participants identified as carriers of a constitutional alteration of the PTEN gene identified and/or confirmed by the Bergonié Institute, the national reference laboratory for the molecular diagnosis of Cowden's disease between 1997 and 2027.

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. Male or female. 2. Adult or child without age limit. 3. Carrier of a constitutional or mosaic alteration of the PTEN gene established and/or confirmed by the Institut Bergonié's genetics laboratory, following a request for molecular diagnosis made between 1997 and 2027. 4. Participant informed of his genetic diagnosis. 5. Participant informed and not having expressed non-opposition to participate in the research. 6. Participant affiliated to a French social security system in accordance with French law on research involving the human person. Exclusion Criteria: 1. Participant under guardianship or curatorship. Exception: a participant with autism may be included in the study. 2. Persons deprived of their liberty by a judicial or administrative decision. 3. Persons under psychiatric care, persons admitted to a health or social establishment for purposes other than research; Exception: a participant with autism may be included in the study.

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Conditions

The condition(s) this trial relates to.

Cowden disease

As listed by the trial registrant

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

PTEN gene mutation

How to take part

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

  1. The places running it

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

  2. The official record

    The full official record for this study. This one lists no contact details, but it is the first place any would appear.

    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

  • 1-CHU Amiens

    Amiens, France

  • 10-CHU Colmar

    Colmar, France

  • 11-CHU Dijon

    Dijon, France

  • 12-CHU Grenoble

    Grenoble, France

  • 13a-AP-HP Hôpital Avicenne

    Paris, France

  • 13b-AP-HP Hôpital Saint-Antoine

    Paris, France

  • 13c-APH-HP Hôpital Salpétrière

    Paris, France

  • 13d-AP-HP Hôpital Trousseau

    Paris, France

  • 13e-AP-HP Hôpital Saint-Louis

    Paris, France

  • 13f-AP-HP Hôpital Robert Debré

    Paris, France

  • 14-Institut Curie

    Paris, France

  • 15-Institut Gustave Roussy

    Villejuif, France

  • 16-CHU Lille

    Lille, France

  • 17-CHU Limoges

    Limoges, France

  • 18a-Hospices Civils Lyon - Lyon Est

    Lyon, France

  • 18b-Hospices Civils Lyon - Lyon Sud

    Lyon, France

  • 19-AP-HM Hôpital de la Timone

    Marseille, France

  • 2-CHU Angers

    Angers, France

  • 20-CHU Montpellier

    Montpellier, France

  • 21-CHU Nantes

    Nantes, France

  • 22-CHU Nice

    Nice, France

  • 23-CHU Nîmes

    Nîmes, France

  • 24-CHU Poitiers

    Poitiers, France

  • 25-Institut du Cancer Courlancy

    Reims, France

  • 26-Centre Eugène Marquis

    Rennes, France

  • 27-CHU Rennes

    Rennes, France

  • 28-CHU Saint-Etienne

    Saint-Etienne, France

  • 29-Institut Strauss

    Strasbourg, France

  • 3-ICO Angers et Nantes

    Angers, France

  • 30-CHU Toulouse

    Toulouse, France

  • 31-CHU Tours

    Tours, France

  • 32-Centre Antoine Lacassagne

    Nice, France

  • 33-Institut Paoli Calmettes

    Marseille, France

  • 34-CH Valence

    Valence, France

  • 35-CHU Rouen

    Rouen, France

  • 36-CH Le Mans

    Le Mans, France

  • 37-CH Niort

    Niort, France

  • 38-CHU Guadeloupe

    Pointe à Pitre, France

  • 4-CHU Besançon

    Besançon, France

  • 40-CHU Troyes

    Troyes, France

  • 5-CHU Bordeaux

    Bordeaux, France

  • 6-Institut Bergonié

    Bordeaux, France

  • 7-CHU Brest

    Brest, France

  • 8-Centre François Baclesse

    Caen, France

  • 9-CH Métropole Savoie Chambéry

    Chambéry, France

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