Since 1990, doctors and scientists at St. Jude Children’s Research Hospital have collected information about adrenocortical tumors (ACT) in children around the world. To learn more about ACT, they created an international tumor registry that records this information. St. Jude doctors and scientists work with other hospitals, clinics, doctors, and scientists around the world to register patients and collect information. Information from blood and tumor samples helps scientists do more research and find new and better ACT treatments.
You, your child, and other family members can join IPACTR to help doctors 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 adrenocortical tumors.
To participate in IPACTR, please contact Dr. Raul Ribeiro at St. Jude Children’s Research Hospital.
- Fill out the Contact IPACTR form.
- Call him at 1-866-278-5833.
- Physicians can fill out the IPACTR Physician Registration Form.
Protocol and Registry Information
The International Pediatric Adrenocortical Tumor Registry (IPACTR) was created by St. Jude Children’s Research Hospital scientists in 1990. IPACTR collects medical information, the results of laboratory tests, and information on treatment and results for children with adrenocortical tumor (ACT). Rare tumors like ACT are often difficult to study because researchers need many patients to collect enough information about the disease, and not many people have ACT. The IPACTR helps overcome this challenge by collecting as much data as possible. It gives researchers a way to:
- Measure how well treatments work,
- Collect blood and tumor samples for genetic testing, and
- Contact patients after treatment.
Who Can Participate in IPACTR? (Eligibility information)
- People who are 21 or younger when ACT is diagnosed
- Family members of an ACT patient who have cancer (malignant tumor)
|Patients||Parents / Relatives|
|Inclusion Criteria:||Inclusion Criteria:|
|21 or younger when ACT is diagnosed||Any age|
|Diagnosis of adrenocortical tumor (adenoma, carcinoma, or undefined)||Diagnosis of cancer|
|Signed informed consent|
|Exclusion Criteria:||Exclusion Criteria:|
|22 or older when ACT is diagnosed||Informed consent has not been signed|
|Informed consent has not been signed|
Trial Sites and Contact Information
There are several sites where your doctor or other health care provider can sign you up for the IPACTR.
|ALL Children's Hospital / St. Petersburg Hospital||St. Petersburg, FL||Gregory Hale, MD
Mike Gates, RN
|The Children's Medical Center||Dayton, OH||Mukund Dole, MD
Jenny Dillon, RN
|St. Jude Children's Research Hospital||Memphis, TN||Raul Ribeiro, MD|
|Cook Children's Medical Center||Fort Worth, TX||Meaghan Granger, MD