The Institute for Pediatric Urology at the Komansky Center for Children’s Health has established the first program in the country for male patients with classical congenital adrenal hyperplasia.  Male individuals with classical CAH may be at higher risk for developing benign tumors in the testicles known as TART. TART stands for testicular adrenal rest tumor. These tumors are caused by adrenal like cells located in the center of the testicle.  These tumors remain undetected until they result in pain, infertility or large size.  If these tumors are allowed to grow for long periods of time (usually years), they can permanently damage the testicles and cause irreversible infertility. If these tumors can be identified early, then additional close follow-up and medical treatment can be very helpful. The best way to find these tumors is by testicular ultrasound; a non-invasive test that allows us to see the inside of the testicle and to determine if a tumor is present. Because these tumors are so hard to identify and if left unchecked, may impact healthy testicle development, our team has established a program for boys with classical CAH.   The team will begin seeing these boys at 8 years old, performing the necessary tests and then we follow up with these boys every year until the age of 18, repeating these tests to determine if any change has occurred to indicate a tumor is developing.   If a tumor is identified, they can develop a treatment plan based on the boy’s age and rate of tumor growth. It is important to stress awareness of this condition and to make sure that boys with CAH are closely monitored.

To learn more about the program, you can call the center at 212-746-3975, or visit their website: http://nyp.org/komansky/patient_care/centers_programs/cah

Dix P. Poppas, M.D.: Surgical Director for the Comprehensive Care Center for CAH

Denise Galan, C.P.N.P.: Surgical Coordinator for the Comprehensive Care Center for CAH