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Rare syndrome linked to higher post-transplant cancer risk – study aims to find out why

NCT ID NCT07605884

Knowledge-focused Sponsor: Assistance Publique - Hôpitaux de Paris 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 This study
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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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

Denys-Drash syndrome is a rare genetic condition that causes kidney failure in early childhood, often requiring a transplant. Past research suggests these children have a much higher chance of developing a type of lymphoma after transplant compared to other kids. This study will compare 108 children with and without the syndrome to confirm that risk and look for contributing factors. The goal is to better understand the danger and improve care for these vulnerable patients.

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 clarify why children with Denys-Drash syndrome face a higher risk of lymphoma after kidney transplant, potentially guiding better monitoring or prevention.
What could go wrong
This is an observational study that does not test a new treatment. It relies on past medical records, so results may be limited by incomplete data or small sample size.

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 108 people

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

Expected to start

Jun 2026

An estimate. Start dates often move.

Expected to finish

Jun 2027

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

In the French cohort of patients followed for Denys Drash, between 2000 and 2022, 36 patients underwent kidney transplants.

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: * Patient must be a minor at the time of kidney transplantation * Diagnosis of Denys-Drash syndrome (WT1 pathogenic variants in exons 8 or 9) for cases * Controls: minor patient, kidney transplanted at the same center as the case, immediately before and immediately after the case * Kidney transplant recipient on immunosuppressants * Hospital follow-up in a participating center in France * Regardless of their Epstein-Barr virus status before transplantation * Between 2000 and 2022 * Holders of parental authority or adult patients informed of the study and not objecting to the processing of medical data for the study Exclusion Criteria: * History of lymphoproliferative disorder prior to transplantation * Other hematopoietic cancer * Other genetic disease with a proven increased risk of lymphoproliferative disorder

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Conditions

The condition(s) this trial relates to.

Denys-Drash syndrome

As listed by the trial registrant

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

Denys-drash syndrome

How to take part

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

  1. The places running it

    7 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 Montpellier

    Montpellier, 34000, France

  • CHU de Lille

    Lille, 59000, France

  • CHU de Nancy - Hôpitaux de Brabois

    Nancy, 54500, France

  • Hôpital Femme Mère Enfant, Hospices Civils de Lyon

    Bron, 69500, France

  • Hôpital Necker-Enfants Malades

    Paris, 75015, France

  • Hôpital Robert Debré

    Paris, 75019, France

  • Hôpital enfants et adolescents, CHU Nantes

    Nantes, 44093, France