Since 1990, St. Jude has collected and recorded clinical information about adrenocortical tumors (ACT) in children around the world. St. Jude doctors and scientists work with other hospitals, clinics, universities and researchers around the world to register patients and collect clinical data and demographic information to help us learn more about this disease. Blood and tumor samples are stored and used for research to gain more understanding about the genetics and molecular events that account for this rare cancer. The results allow scientists to test and improve treatments.
Rare tumors like ACT are often difficult to study because researchers need a large number of cases to learn about the disease. IPACTR helps overcome this challenge by collecting and recording information in a single database and enables health care professionals to address the cancer burden more effectively.
You, your child and other family members can join IPACTR to help doctors and scientists learn more about ACT. Registration is free. Information from the registry is available to doctors, other health care providers, and other people who want to know more about ACT.
To learn more about the IPACTR results, we encourage you to explore the Data & Research page in the "For Clinicians & Researchers" section.