NCI Childhood Cancer Data Initiative (CCDI) Led Pediatric, Adolescent, and Young Adult Rare Cancer Registry for Very Rare Solid Tumors
- Very Rare Tumors
- Very Rare Cancers
- Other Solid Tumors
- Solid Tumor
- Pediatric Rare Tumors
At a glance
- Phase
- Phase not stated
- Study type
- Observational
- Sponsor
- National Cancer Institute (NCI)
- Enrolment target
- 4,000
- Started
- 4 October 2026
- Main results due
- 1 April 2035
- Study sites
- 1
- Registry updated
- 29 September 2026
Can you take part?
- Ages 1 month to 120 years.
- Open to any sex.
- You need the condition being studied — healthy volunteers are not accepted.
These are the headline rules only. Every study has a longer list, and whether you are eligible is decided by the research team at the site — never by this page.
Read the full eligibility criteria
* 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.
What this study is about
In the sponsor’s own words, from the registry.
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.
Study sites(1)
National Institutes of Health Clinical Center
Bethesda, Maryland, United States
Recruiting
Showing 1 of 1 sites. 1 of the 1 site on this study is recruiting right now — a site can stop enrolling while the study as a whole is still open.
Source: ClinicalTrials.gov record NCT07489378. Trialion does not run this study, is not paid to refer anyone to it, and cannot enrol you. Eligibility is always decided by the research team at the site.
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