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Understanding Rare Solid Tumors and Cancer Syndromes

This study aims to learn more about rare solid tumors and hereditary cancer syndromes. Researchers want to understand how these tumors develop and progress over time by collecting information and biological samples (like blood or tissue) from people with these conditions. The goal is to better define the clinical picture of these diseases, including how they affect patients and their survival, over a 10-year period. This information could lead to better ways to screen for, prevent, and treat rare cancers. You may be able to join if you have a rare solid tumor, a genetic change that increases your risk for a rare solid tumor, or a family history of rare solid tumors.

Study design
This is an observational study, meaning researchers will collect information without giving any specific treatments. It plans to enroll up to 10,000 participants.
What's involved
Not specified in the trial record.
Compensation
Not stated in the trial record.
Follow-up
Participants will be evaluated longitudinally (over time) for 10 years to understand the disease course and survival.

AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.

NCT03739827

Natural History and Biospecimen Acquisition for Children and Adults With Rare Solid Tumors

Recruiting
Not specifiedAges 4+Observational
National Cancer Institute (NCI)
~10,000 participants
Updated 2026-08-27 on ClinicalTrials.gov

At a glance

Recruiting sites
3 of 3 listed sites are recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
To comprehensively and longitudinally evaluate the natural history of patients with rare solid tumors or tumor predisposition syndromes, estimating and defining their clinical spectrum (e.g. disease course and survival)
Measured over 10 years

Conditions

Malignant Solid Tumors
Other Neoplasms Solid Tumors
Pediatric Solid Tumor
Refractory Solid Tumors
Solid Tumor

Explore related trials

Hereditary Neoplastic SyndromeSolid NeoplasmGermline genetic variant

Where it's being run

3 sites across 3 states
Maryland1
Oregon1
Texas1

Study leadership

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

Who to contact

Barbara J Thomas, R.N.
[email protected]
(240) 858-3633
Email the study team

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Do you actually qualify for this trial?

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Eligibility criteria

Inclusion

Cohort 1: Participants with a diagnosis of a rare solid tumor (fewer than 15 cases in 100,000 people per year). There are no age restrictions beyond the neonatal period (4 weeks).
Cohort 2: Participants without a rare tumor who have a germline genetic variant that predisposes to a rare solid tumor
Cohort 3: Relatives of participants with diagnosis of rare solid tumors who do NOT have a known germline variant that predisposes to a rare solid tumor
Cohort 4: Parent/guardian of child participating in a focus group if not already enrolled on the study.
Ability of subject or Legally Authorized Representative (LAR) to understand and the willingness to sign a written informed consent document.

What this trial measures

  • To comprehensively and longitudinally evaluate the natural history of patients with rare solid tumors or tumor predisposition syndromes, estimating and defining their clinical spectrum (e.g. disease course and survival)10 years

    To comprehensively and longitudinally evaluate the natural history of patients with rare solid tumors or tumor predisposition syndromes, estimating and defining their clinical spectrum (e.g. disease course and survival)