Registry for children with adrenocortical tumors
International Pediatric Adrenocortical Tumor Registry
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 |
|---|---|
| Enrollment | 9999 (estimated) |
| Ages | N/A to 21 Years |
| Sex | All |
| Sponsor | St. Jude Children's Research Hospital Academic / other |
| Locations | 5 sites (Stanford, California and 4 other locations) |
| Trial ID | NCT00700414 on ClinicalTrials.gov |
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.
Who should consider this trial
Good fit: Ideal candidates include children and adolescents aged 21 years or younger with a suspected or confirmed diagnosis of adrenocortical tumor.
Not a fit: Patients over the age of 21 or those without a diagnosis of adrenocortical tumor will not benefit from this study.
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 performed: While this approach is focused on a rare tumor registry, similar registries have shown success in improving understanding and treatment of rare diseases.
Eligibility criteria
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 this trial is running
Stanford, California and 4 other locations
- Stanford University — Stanford, California, United States (Completed)
- All Children's Hospital/St. Petersburg Hospital — St. Petersburg, Florida, United States (Completed)
- The Children's Medical Center — Dayton, Ohio, United States (Recruiting)
- St. Jude Children's Research Hospital — Memphis, Tennessee, United States (Recruiting)
- 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
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.