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Rare syndrome study seeks to predict tumor development

NCT ID NCT00780117

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
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 This study
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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 completed study looked at 57 people with CURRARINO syndrome, a rare condition that can include a tumor near the tailbone. Researchers used yearly MRI scans and blood tests to track tumor growth and understand genetic links. The goal was to find out who is most at risk and why, which could lead to better monitoring in the future.

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 help identify which patients with CURRARINO syndrome are at highest risk for sacrococcygeal teratoma, enabling earlier monitoring and intervention.
What could go wrong
This is an observational study with only 57 participants, so findings may not apply to all patients. It aims to understand the disease, not test a treatment, so no direct benefit is guaranteed.

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

57 people

The number who actually took part.

Start date

Jun 2008

Finished

Dec 2011

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

specialized consultations in the currarino syndrom network

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: * At least 1 out of the 4 major signs of CURRARINO syndrome: 1. Sacral agenesis 2. Hindgut malformation or chronic constipation 3. Presacral tumor and/or 4. TETHECORD syndrome and/or lipoma of the filum or the conus * Anomaly genotyping HLXB9 without clinical expression Exclusion Criteria: \- Opposition to sign informed consent agreement

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Conditions

The condition(s) this trial relates to.

Currarino triad sacrococcygeal teratoma

As listed by the trial registrant

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

Currarino syndrome Presacral mass Sacrococcygeal teratoma

Contacts and locations

Locations

  • Hôpital Necker-Enfants Malades Pediatric Surgery Department

    Paris, 75015, France

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