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New study tracks kids prone to cancer to uncover early warning signs

NCT ID NCT04511806

Knowledge-focused Sponsor: Emory University 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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 27, 2026 · Last updated Jun 27, 2026

Summary

This study follows children under 21 who have a genetic condition that raises their risk of developing cancer, along with their relatives. Researchers will collect health information and samples over time to better understand how these cancers develop and how to catch them early. The goal is to improve monitoring and prevention strategies for these high-risk children.

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 1,050 people

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

Started

Apr 2021

Expected to finish

Oct 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.

Who is studied

The Primary Subjects of this study are children (age 0-21) with a CPS. Members of their Primary Family Unit will also be recruited for this study, including CPS-Affected Parents, Unaffected Parents and Siblings. Other adult family members (with documented or obligate CPS) are also eligible to enroll as Affected Family Members.

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: Primary Subjects must meet all of the below criteria to be eligible for enrollment: 1. Be less than 21 years of age at the time of enrollment 2. Have a diagnosis of a specific CPS, whether they have had cancer or not * Based on clinical laboratory testing demonstrating a Pathogenic or Likely Pathogenic germline variant and/or * Based on well-established clinical diagnostic criteria and/or * Based on high clinical suspicion of a specific CPS with clinical laboratory testing demonstrating a variant of uncertain significance (VUS) Affected Parents must meet all of the following criteria to be eligible for enrollment: 1. Be the biologic parent of a Primary Subject and 2. Carry a diagnosis (or obligate diagnosis) of the familial CPS Adult Affected Siblings must meet all of the following criteria to be eligible for enrollment: 1. Be the biologic sibling of a Primary Subject and 2. Carry a diagnosis (or obligate diagnosis) of the familial CPS Unaffected Parents and Siblings must meet all of the following criteria to be eligible for enrollment 1. Be the biologic parent or sibling of a Primary Subject and 2. Not carry a diagnosis (or obligate diagnosis) of the familial CPS Affected Family Members must meet all of the following criteria to be eligible for enrollment: 1\. Carry a diagnosis of (or obligate diagnosis of) the familial CPS. Documentation is requested but not required. More than one child from a Primary Family Unit may be a Primary Subject. An Unaffected Sibling may be reclassified as a Primary Subject if diagnosed with a CPS during childhood. Exclusion Criteria: * Individuals with a strong personal or family history of cancer without a genetic or clinical diagnosis of a specific CPS are not eligible for enrollment.

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Conditions

The condition(s) this trial relates to.

childhood malignant neoplasm hereditary neoplastic syndrome neoplasm

As listed by the trial registrant

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

Pediatric cancer

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 in 2 countries. 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

  • Baylor College of Medicine

    RECRUITING

    Houston, Texas, 77030, United States

  • Children's Healthcare of Atlanta (CHOA)

    RECRUITING

    Atlanta, Georgia, 30322, United States

  • Children's Hospital of Philadelphia

    RECRUITING

    Philadelphia, Pennsylvania, 19104, United States

  • Dana Farber Cancer Institute

    RECRUITING

    Boston, Massachusetts, 02215, United States

  • Hospital for Sick Children

    RECRUITING

    Toronto, Ontario, Canada

  • Primary Children's Hospital

    RECRUITING

    Salt Lake City, Utah, 84113, United States

  • St. Jude Children's Research Hospital

    RECRUITING

    Memphis, Tennessee, 38105-3678, United States

More trials for these conditions

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