Registry for children with adrenocortical tumors
Official title: International Pediatric Adrenocortical Tumor Registry
Run by St. Jude Children's Research Hospital · NCT00700414 · Data updated 2026-11-12
This study collects information and samples from children with adrenocortical tumors to learn more about the disease and help improve genetic counseling for families affected by it.
Quick facts
| Study type | Observational |
|---|---|
| Ages | Any age to 21 Years |
| Sex | All |
| Enrollment | 9999 (estimated) |
| Sponsor | St. Jude Children's Research Hospital Academic / other |
| Locations | 5 sites (Stanford, California and 4 other locations) |
| Status | Recruiting |
| Started | October 1, 2001 |
| Main results expected | December 2040 |
| Study ends | December 2040 |
| Registry record updated | May 22, 2026 |
| Trial ID | NCT00700414 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a good fit
Ideal candidates include children and adolescents aged 21 years or younger with a suspected or confirmed diagnosis of adrenocortical tumor.
✕Probably not a fit
Patients over the age of 21 or those without a diagnosis of adrenocortical tumor will 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 collects demographic and medical information from children and adolescents diagnosed with adrenocortical tumors to better understand the clinical and epidemiological aspects of this rare disease. It also includes molecular studies of tumor cells to investigate the role of the TP53 gene and other genetic pathways. Participants will provide biological material for genetic analysis, which will aid in understanding familial cancer syndromes and improve genetic counseling for affected families. The registry aims to gather data that can be analyzed collectively, providing insights that individual institutions cannot achieve alone.
Why it matters
Potential benefit: If successful, this study could enhance understanding of adrenocortical tumors and improve genetic counseling for affected families.
How similar studies have gone: While this approach is focused on a rare tumor registry, similar registries have shown success in improving understanding and treatment of rare diseases.
Who can join: the full rules
Show full inclusion / exclusion criteria
STRATIFICATION ASSIGNMENT: * Stratum A: participant suspected or confirmed diagnosis of adrenocortical tumor (ACT) * Stratum R: relative of participant with ACT and TP53 mutation who has diagnosis of malignancy * Stratum P: biological parent of participant with ACT Inclusion Criteria - Stratum A (participant with ACT): * Age ≤ 21 years old at diagnosis * Suspected or confirmed diagnosis of adrenocortical tumor (adenoma, carcinoma or undefined histology). * Signed informed consent Inclusion Criteria - Stratum R (relative): * Any age * Diagnosis of malignant tumor * Signed informed consent Inclusion Criteria - Stratum P (parent): * Biological parent of Stratum A participant
Where it's running
-
The Children's Medical Center
Dayton, Ohio, United States Recruiting -
St. Jude Children's Research Hospital
Memphis, Tennessee, United States Recruiting -
Stanford University
Stanford, California, United States Completed -
All Children's Hospital/St. Petersburg Hospital
St. Petersburg, Florida, United States Completed -
Cook Children's Medical Center
Fort Worth, Texas, United States Completed
Study contacts
- Principal investigator: Raul C Ribeiro, MD — St. Jude Children's Research Hospital
- Study coordinator: Raul C Ribeiro, MD
- Email: referralinfo@stjude.org
- Phone: 866-278-5833
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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.