Actively Recruiting
Natural History and Biospecimen Acquisition Study for Children and Adults With Rare Solid Tumors
Led by National Cancer Institute (NCI) · Updated on 2026-06-08
10000
Participants Needed
3
Research Sites
200 weeks
Total Duration
On this page
AI-Summary
What this Trial Is About
Researchers are investigating rare solid tumors, which affect fewer than 150 people per million each year, including hereditary cancer syndromes. The goal is to better understand how these tumors develop, their clinical behavior, and genetic characteristics. This long-term observational study focuses on participants with rare tumors, their relatives, and carriers of genetic variants that predispose to these tumors to improve knowledge for screening, prevention, and treatments. Participants may provide medical history, family history, saliva samples, and possibly tumor tissue samples if they have a tumor. Some will undergo physical exams, clinical photography, blood, urine, saliva, and stool sample collection, specialist consultations, scans involving low radiation or magnetic fields, genetic testing, and counseling. The study also offers focus groups for those with similar diagnoses and may invite participants to join other related protocols. During the study, participants will be contacted yearly to update their medical and family history and report any tumor changes. Researchers review medical records, imaging, pathology, and genetic data while collecting patient-reported outcomes. The primary measurement is to evaluate the natural history and clinical course of rare solid tumors over a 10-year period. Active long-term follow-up is a key feature, aiming to maintain contact and provide insights for participants and the medical community.
CONDITIONS
Brief Title
Natural History and Biospecimen Acquisition for Children and Adults With Rare Solid Tumors
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Participants with a diagnosis of a rare solid tumor (fewer than 15 cases in 100,000 people per year), with no age restrictions beyond the neonatal period (4 weeks)
- Participants without a rare tumor who have a germline genetic variant that predisposes to a rare solid tumor
- Relatives of participants with diagnosis of rare solid tumors who do NOT have a known germline variant that predisposes to a rare solid tumor
- Parent or guardian of child participating in a focus group if not already enrolled on the study
- Ability of participant or legally authorized representative to understand and sign informed consent
You will not qualify if you...
History of severe allergic reactions to study medication Currently pregnant or breastfeeding Recent participation in another clinical trial within the last 30 days Presence of uncontrolled medical conditions that could affect safety
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Your Study Journey
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
1 visit (in-person)
Duration - Initial evaluation period varies
Participants provide clinical information and biospecimens for review, and if indicated, are invited for additional evaluations including clinical phenotyping, genotyping, imaging, and patient-reported outcomes.
1 or more visits depending on evaluation needs
Duration - Up to 10 years
Participants are followed longitudinally to evaluate the natural history of rare solid tumors or tumor predisposition syndromes, including ongoing collection of clinical data and biospecimens.
Ongoing visits as scheduled for follow-up and assessments
Trial Site Locations
Total: 3 locations
1
National Institutes of Health Clinical Center
Bethesda, Maryland, United States, 20892
Actively Recruiting
2
Oregon Health and Science University
Portland, Oregon, United States, 97239
Actively Recruiting
3
Texas Children's Hospital
Houston, Texas, United States, 77030
Actively Recruiting
Research Team
B
Barbara J Thomas, R.N.
M
Mary F Wedekind Malone, D.O.
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
4
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