Skip to Main Content

International Pediatric Adrenocortical Tumors Registry (IPACTR)

St. Jude Children’s Research Hospital has a team of doctors and researchers dedicated to treating and learning about adrenocortical tumors (ACTs). This rare cancer develops on the adrenal glands.

St. Jude developed the International Pediatric Adrenocortical Tumor Registry (IPACTR) to increase knowledge of the disease and how best to care for patients and their families. We work with other hospitals, clinics, universities, and researchers around the world to learn more about ACT.

Rare tumors like ACT are often hard to study. We need a lot of details to learn about the disease. IPACTR helps us collect these details.

We also do lab tests on the tumor and blood samples we collect from patients and their relatives. These tests help scientists improve treatments.

You, your child, and other family members can help us learn more about ACT. Registration in IPACTR is free. Information from the registry is used by doctors, researchers, and others who want to know more about ACT.

Take part in IPACTR

IPACTR: International Pediatric Adrenocortical Tumor Registry

Full title:

International Pediatric Adrenocortical Tumor Registry

Study goal:

The main goal of IPACTR is to collect relevant clinical and biological data, including blood and tissue samples, to help researchers better understand the 1) common signs and symptoms of ACT, 2) length of time between the first signs and symptoms and diagnosis of ACT, 3) how genetic conditions such as Li-Fraumeni and Beckwith-Wiedemann syndrome make a person more likely to develop ACT, 4) family history of cancer in relatives of children with ACT, 5) how children with ACT in different parts of the world are treated, and 6) how the genetic makeup affects survival in children and relatives with ACT.


Adrenocortical tumors (carcinoma and adenoma)


21 years of age or younger at diagnosis

ACT treatment at St. Jude

St. Jude provides the highest quality of care for patients with ACT:

  • St. Jude scientists found specific mutations (changes) in the TP53 gene that increase the likelihood a person will develop ACT. 
  • St. Jude brings the minds and efforts of doctors and scientists interested in ACT together. St. Jude doctors and scientists from the clinic and the lab regularly meet. They discuss research, projects, and new ideas to treat ACT. 
  • St. Jude takes part in international studies, including work with the Children’s Oncology Group, to find the safest and most effective ways to treat both patients with small tumors and tumors that have spread.
  • St. Jude is studying the genetic changes in the tumor and the patients. These studies may show new and better ways to treat patients with ACT. 
  • Surgery is an important part of successful ACT treatment. Surgery in children can be difficult. Adrenal glands are fragile, and tumors may have blood clots in the large veins. The expert skills and experience of St. Jude surgeons can help improve patient outcomes.
  • St. Jude offers a dedicated team of specialists to meet the needs of children with cancer, including:
    • Surgeons, doctors, and nurses who treat this cancer
    • Doctors who specialize in radiation therapy and pathology (making a diagnosis by looking at tumor tissue under the microscope)
    • Experts in diagnostic imaging and nuclear medicine
    • Genetic counselors
    • Clinical dietitians
    • Child life specialists
    • Psychologists
    • Researchers and scientists

More reasons to choose St. Jude for care include:

  • We are consistently ranked among the best childhood cancer centers in the nation by US News & World Report.
  • At St. Jude, we have created an environment where children can be children and families can be together. 
  • St. Jude patients and families never pay for services authorized by St. Jude.
  • We lead more clinical trials for childhood cancer than any other hospital in the U.S.
  • St. Jude is the only National Cancer Institute–designated Comprehensive Cancer Center just for children. A Comprehensive Cancer Center meets rigorous standards for research that develops new and better approaches to prevent, diagnose, and treat cancer.
  • The nurse-to-patient ratio at St. Jude is about 1:3 in hematology and oncology and 1:1 in the Intensive Care Unit.
  • Patients may be able to get expert, compassionate care and treatment closer to their homes through the St. Jude Affiliate Program.

Contact us 

If you have questions about the IPACTR program, please contact our team:

Fax: 901-521-9005
OnlineContact Form


Learn more