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IPACTR: International Pediatric Adrenocortical Tumor Registry

About this observational study

Adrenocortical tumor (ACT) is a very rare and fast-growing cancer of the adrenal glands, located on the top of both kidneys. The tumor is seen in only about 0.2 percent of all childhood cancers. It affects more girls than boys and most commonly develops in children between ages one and four years.

In the International Pediatric Adrenocortical Tumor Registry (IPACTR) study, researchers at St. Jude Children’s Research Hospital and at institutions around the world are working together to learn more about the clinical and genetics of adrenocortical tumor. This information may help researchers learn better ways of treating children with these rare tumors.

Eligibility overview

  • Diagnosis of an adrenocortical tumor (ACT)
  • 21 years of age or younger at diagnosis
  • Relatives of patients with ACT

The above information is intended to provide only a basic description about a research protocol that may be currently active at St. Jude. The details made available here may not be the most up-to-date information on protocols used by St. Jude. To receive full details about a protocol and its status and or use at St. Jude, a physician must contact St. Jude directly.


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

Clinical trials categories:

Childhood Cancer Adrenocortical Tumor Solid Tumors

For physicians and researchers

Patients accepted to St. Jude must be referred by a physician or other qualified medical professional. Learn how St. Jude can partner with you to care for your patient.


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