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New national registry aims to unlock secrets of Ultra-Rare childhood cancers

NCT ID NCT07489378

Knowledge-focused Sponsor: National Cancer Institute (NCI) 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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 25, 2026 · Last updated Sep 18, 2026 · Updated 59 times

Summary

This study creates a registry for children, teens, and young adults (ages 1 month to 39 years) diagnosed with very rare solid tumors (fewer than 2 cases per million people per year). Researchers will collect medical records, tumor samples, and patient questionnaires to better understand these cancers. No clinic visits are needed; participation is by phone or mail. The goal is to gather data that could lead to future treatments.

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 registry will provide crucial data to help researchers understand very rare cancers and develop future treatments.
What could go wrong
This is an observational study, not a treatment trial. It may not directly benefit participants, and data collection could be incomplete or slow.

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 4,000 people

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

Expected to start

Sep 2026

An estimate. Start dates often move.

Expected to finish

Apr 2037

An estimate. End dates often move.

Lead sponsor

A government research agency

The lead sponsor is the US National Institutes of Health.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

This is a longitudinal observational study and registry for children, adolescents and young adults (AYAs) with very rare cancers.

Ages

1 month to 120 years

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: * History of newly diagnosed (within 1 year of diagnosis) very rare solid tumor (defined as an estimated 2 incident cases per million per year). * Age \>= 1 month and \<= 39 years at the time of diagnosis. * Participants must have established care with a local treating physician. * Ability of the participant, parent/guardian, or Legally Authorized Representative (LAR) to understand and the willingness to sign a written informed consent document. EXCLUSION CRITERIA: * Diagnosis of any of the following at any time: * Ewing Sarcoma * Osteosarcoma * Rhabdomyosarcoma * Diffuse midline glioma (H3K27 altered) * Atypical teratoid rhabdoid tumor * Pleuropulmonary blastoma * Common adult cancers that occur in pediatric/AYA populations (i.e., colorectal cancer, breast cancer) * The participant is unlikely to comply with the terms of the protocol.

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Conditions

The condition(s) this trial relates to.

cancer childhood neoplasm neoplasm

As listed by the trial registrant

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

Other solid tumors Pediatric rare tumors Solid tumor Very rare cancers Very rare tumors

How to take part

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

  1. The places running it

    1 site. 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

  • National Institutes of Health Clinical Center

    RECRUITING

    Bethesda, Maryland, 20892, United States

More trials for these conditions

Other studies related to the condition(s) this trial covers.