International Pediatric Adrenocortical Tumor Registry
1 other identifier
observational
9,999
1 country
5
Brief Summary
This study aims to collect demographic and medical information including detailed family history of cancer of children and adolescents with adrenocortical tumors in order to learn more about the clinical and epidemiological aspects, treatment modalities, and outcome of patients with this rare disease, worldwide. In addition, investigators at St. Jude Children's Research Hospital (SJCRH) plan to perform molecular studies of tumor cells aimed to clarify the role of the TP53 gene and other genetic pathways in these tumors. They aim to obtain relevant biological material from participants with adrenocortical tumor (ACT), their biological parents, and relatives for determination of the TP53 germline status, molecular studies of the TP53 gene, and other molecular pathways.
Trial Health
Trial Health Score
Automated assessment based on enrollment pace, timeline, and geographic reach
participants targeted
Target at P75+ for all trials
Started Oct 2001
Longer than P75 for all trials
5 active sites
Health score is calculated from publicly available data and should be used for screening purposes only.
Trial Relationships
Click on a node to explore related trials.
Study Timeline
Key milestones and dates
Study Start
First participant enrolled
October 1, 2001
CompletedFirst Submitted
Initial submission to the registry
June 13, 2008
CompletedFirst Posted
Study publicly available on registry
June 18, 2008
CompletedPrimary Completion
Last participant's last visit for primary outcome
December 1, 2040
ExpectedStudy Completion
Last participant's last visit for all outcomes
December 1, 2040
December 18, 2025
December 1, 2025
39.2 years
June 13, 2008
December 16, 2025
Conditions
Outcome Measures
Primary Outcomes (1)
Collect demographic/medical information, detailed family history of cancer of children/adolescents with adrenocortical tumors, learn more about the clinical and epidemiological aspects, treatment modalities, and outcome of patients
Annually from diagnosis until no longer being followed, defined as up to 5 years from the date of last follow-up
Study Arms (1)
Participants
Any participant who meets eligibility criteria and consents to participate in the trial.
Eligibility Criteria
Age ≤ 21 years old at diagnosis of adrenocortical tumor. Relatives of the ACT patients of any age with a diagnosis of malignant tumor.
You may qualify if:
- Age ≤ 21 years old at diagnosis
- Suspected or confirmed diagnosis of adrenocortical tumor (adenoma, carcinoma or undefined histology).
- Signed informed consent
- Any age
- Diagnosis of malignant tumor
- Signed informed consent
- Biological parent of Stratum A participant
Contact the study team to confirm eligibility.
Sponsors & Collaborators
Study Sites (5)
Stanford University
Stanford, California, 94305, United States
All Children's Hospital/St. Petersburg Hospital
St. Petersburg, Florida, 33701, United States
The Children's Medical Center
Dayton, Ohio, 45404, United States
St. Jude Children's Research Hospital
Memphis, Tennessee, 38105, United States
Cook Children's Medical Center
Fort Worth, Texas, 76104, United States
Related Publications (1)
Pinto EM, Maxwell KN, Halalsheh H, Phillips A, Powers J, MacFarland S, Walsh MF, Breen K, Formiga MN, Kriwacki R, Nichols KE, Mostafavi R, Wang J, Clay MR, Rodriguez-Galindo C, Ribeiro RC, Zambetti GP. Clinical and Functional Significance of TP53 Exon 4-Intron 4 Splice Junction Variants. Mol Cancer Res. 2022 Feb;20(2):207-216. doi: 10.1158/1541-7786.MCR-21-0583. Epub 2021 Oct 21.
PMID: 34675114DERIVED
Related Links
Biospecimen
Peripheral blood sample with DNA and RNA; Tumor Tissue (of any histology); Adrenocortical tumors;
MeSH Terms
Conditions
Condition Hierarchy (Ancestors)
Study Officials
- PRINCIPAL INVESTIGATOR
Raul C Ribeiro, MD
St. Jude Children's Research Hospital
Central Study Contacts
Study Design
- Study Type
- observational
- Observational Model
- OTHER
- Time Perspective
- PROSPECTIVE
- Sponsor Type
- OTHER
- Responsible Party
- SPONSOR
Study Record Dates
First Submitted
June 13, 2008
First Posted
June 18, 2008
Study Start
October 1, 2001
Primary Completion (Estimated)
December 1, 2040
Study Completion (Estimated)
December 1, 2040
Last Updated
December 18, 2025
Record last verified: 2025-12