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NCI Childhood Cancer Data Initiative (CCDI) Led Pediatric, Adolescent, and Young Adult Rare Cancer Registry for Very Rare Solid Tumors

NCT07489378 · Status: RECRUITING · Type: OBSERVATIONAL · Enrollment: 4000

Last updated 2026-05-22

No results posted yet for this study

Summary

Background:

All childhood cancers are rare, but some are called very rare. Very rare cancers are diagnosed in 2 or fewer out of 1 million people each year. Researchers want to gather data so they can learn more about these very rare cancers. They hope to use the data to develop future treatments.

Objective:

To gather data for a registry of very rare cancers found in children, teens, and young adults.

Eligibility:

People aged 1 month to 39 years newly diagnosed (within the past year) with a very rare cancer.

Design:

Participation will be by phone or email. No clinic visits are required.

Researchers will look at the participant s medical records. They will ask for samples of tumor tissue that were already removed. They will use the samples for genetic testing. The results of these tests will be sent to the participant s own doctors.

Some participants will be asked for saliva or cheek swab samples. They will receive a kit in the mail. They will spit into a tube or swab the inside of their cheek. They will mail the sample back to the lab.

Participants will fill out questionnaires once a year for 5 years. They will answer questions about:

Family history, such as other cancers in the family and their income, work, and education.

Demographics, such as their gender, nationality, ethnicity, education, and work history.

Symptoms and treatment for their cancer. This may include level of pain, and emotional and physical well-being.

Participants data will be added to a secure database for other researchers. Their data will be anonymous.

Conditions

  • Very Rare Tumors
  • Very Rare Cancers
  • Other Solid Tumors
  • Solid Tumor
  • Pediatric Rare Tumors

Interventions

OTHER

Natural history study of individuals with very rare tumors

We will collect information about the initial presentation and diagnosis of the disease, management, and tumor treatment history. Participants or parent/guardian will be asked to complete questionnaires and patient-reported outcome (PRO) instruments. Pathology materials (e.g., tissue samples, slides, or blocks) and saliva and/or buccal sample will be requested.

Sponsors & Collaborators

  • National Cancer Institute (NCI)

    lead NIH

Principal Investigators

  • Mary F Wedekind Malone, D.O. · National Cancer Institute (NCI)

Eligibility

Min Age
1 Month
Max Age
120 Years
Sex
ALL
Healthy Volunteers
No

Timeline & Regulatory

Start
2026-05-27
Primary Completion
2035-04-01
Completion
2037-04-01

Countries

  • United States

Study Locations

More Related Trials

Entities

Diseases

Read the full study record

This page highlights key information. For complete eligibility criteria, study locations, investigator contacts, and the full protocol, visit the original record on ClinicalTrials.gov.

View NCT07489378 on ClinicalTrials.gov