Cancer Help Guide

Adrenocortical carcinoma · NCT03739827

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

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

Status
RECRUITING (ClinicalTrials.gov)
Phase
observational
Sponsor
National Cancer Institute (NCI)
Registry records
CTGOV NCT03739827 (RECRUITING)
Registry last updated 2026-10-29

Eligibility, line by line

VerdictIn plain words (machine summary)Registry text, verbatimIf unmet
inclusion
inclusion · condition · confidence 0.95
Cohort 1: Participants with a diagnosis of a rare solid tumor (fewer than 15 cases in 100,000 people per year)."Cohort 1: Participants with a diagnosis of a rare solid tumor (fewer than 15 cases in 100,000 people per year)."
inclusion
inclusion · age sex · confidence 0.30
There are no age restrictions beyond the neonatal period (4 weeks)."There are no age restrictions beyond the neonatal period (4 weeks)."
inclusion
inclusion · biomarker · confidence 0.90
Cohort 2: Participants without a rare tumor who have a germline genetic variant that predisposes to a rare solid tumor"Cohort 2: Participants without a rare tumor who have a germline genetic variant that predisposes to a rare solid tumor"
inclusion
inclusion · other · confidence 0.30
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 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"
inclusion
inclusion · other · confidence 0.30
Cohort 4: Parent/guardian of child participating in a focus group if not already enrolled on the study."Cohort 4: Parent/guardian of child participating in a focus group if not already enrolled on the study."
inclusion
inclusion · consent · confidence 0.30
Ability of subject or Legally Authorized Representative (LAR) to understand and the willingness to sign a written informed consent document."Ability of subject or Legally Authorized Representative (LAR) to understand and the willingness to sign a written informed consent document."

Criteria extracted by claude-sonnet-5-5; 0 extracted quotes rejected for not matching the registry text.

Full eligibility text as the registry publishes it
* 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

Routes in: how this trial is reached and paid for

  • NIH Clinical Center: care at no cost, travel supported

    Medical care at the NIH Clinical Center in Bethesda is provided at no cost to people enrolled on a study, and travel and lodging support is available, including for people living outside the US.

    For non-US residents NIH provides airfare from the nearest US point of entry and a nightly hotel allowance. That makes Bethesda cheaper to reach than most US hospitals despite the distance. Ask the study contact what the current travel policy covers before booking anything.

    Verify with: NIH Clinical Center: participating in a study

    Care 0; transatlantic flight at your own cost, then supported

  • US trials at ordinary hospitals: routine care is billed

    In the US a sponsor funds the study drug and study-specific scans, but the routine care around them is billed to insurance. Without US cover that bill falls on you.

    Cost is documented as the barrier that stops roughly 45 percent of US patients joining trials, before any question of being a non-resident. Eligibility on paper does not make a US site reachable. One email to the study coordinator asking what a non-resident without US insurance would be billed settles it either way.

    Verify with: The study coordinator listed on the registry record

    Ask first; potentially very high

  • Free patient navigation

    myTomorrows (Amsterdam) provides medically trained, multilingual patient navigators who search ClinicalTrials.gov, EU CTIS and ISRCTN and can support a doctor through an expanded-access application. Free to patients and families.

    A navigator keeps searching after any single page stops being current. Use it alongside this site, not instead of your oncologist.

    Verify with: myTomorrows for patients

    0

Sites (3)

United States

  • National Institutes of Health Clinical Center, Bethesda
  • Oregon Health and Science University, Portland
  • Texas Children's Hospital, Houston