Understanding rare solid tumors and their genetic factors
Official title: Natural History and Biospecimen Acquisition Study for Children and Adults With Rare Solid Tumors
Run by National Institutes of Health Clinical Center (CC) · NCT03739827 · Data updated 2026-11-12
This study is looking to learn more about rare solid tumors and their genetic factors by collecting samples and medical histories from people who have these tumors to help improve future treatments and prevention.
Quick facts
| Study type | Observational |
|---|---|
| Ages | 4 Weeks and up |
| Sex | All |
| Enrollment | 10000 (estimated) |
| Sponsor | National Institutes of Health Clinical Center (CC) NIH |
| Drugs / interventions | radiation |
| Locations | 3 sites (Bethesda, Maryland and 2 other locations) |
| Status | Recruiting |
| Started | January 28, 2019 |
| Main results expected | May 31, 2028 |
| Study ends | March 31, 2032 |
| Registry record updated | November 9, 2026 |
| Trial ID | NCT03739827 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a good fit
Ideal candidates include individuals diagnosed with rare solid tumors, those with a family history of such tumors, or individuals with genetic variants predisposing them to rare tumors.
✕Probably not a fit
Patients with common solid tumors or those without any genetic predisposition to rare tumors may not benefit from this study.
A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.
What this trial studies
This observational study aims to investigate the natural history and genetic characteristics of rare solid tumors by collecting biological samples and medical histories from affected individuals. Participants will be screened based on their medical and family histories, and those with rare tumors will have their medical records reviewed. The study seeks to gather valuable data that could lead to improved screening, prevention, and treatment strategies for rare cancers.
Why it matters
Potential benefit: If successful, this study could enhance understanding of rare solid tumors, leading to better screening and treatment options for patients.
How similar studies have gone: Previous studies on rare tumors have shown that even non-interventional research can lead to significant advancements in understanding and treating these conditions.
Who can join: the full rules
Show full inclusion / exclusion criteria
* INCLUSION CRITERIA: * 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). OR -Cohort 2: Participants without a rare tumor who have a germline genetic variant that predisposes to a rare solid tumor OR -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 OR * 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. EXCLUSION CRITERIA: None
Where it's running
-
National Institutes of Health Clinical Center
Bethesda, Maryland, United States Recruiting -
Oregon Health and Science University
Portland, Oregon, United States Recruiting -
Texas Children's Hospital
Houston, Texas, United States Recruiting
Study contacts
- Principal investigator: Mary F Wedekind Malone, D.O. — National Cancer Institute (NCI)
- Study coordinator: Barbara J Thomas, R.N.
- Email: barbara.thomas2@nih.gov
- Phone: (240) 858-3633
Similar studies
Other studies for the same condition or treatment. Recruiting studies are listed first.
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SHR-4595 Injection in Advanced Solid Tumors: Safety, Tolerability, and Dosing in Phase 1
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How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.