The CAH Comprehensive Care Center is intended to be a multi-disciplinary team of healthcare professionals who are experts or developing experts in the care of CAH. The goal is to provide excellent care to patients with Congenital adrenal hyperplasia (CAH) from childhood to adulthood, promote research that will improve patient lives, and educate patients, families and other healthcare providers in CAH and its management. There are currently eight Comprehensive Care Centers in the U.S.
New York-Presbyterian/Weill Cornell Medical Center
525 East 68th Street, Box 103
New York, NY 10065
646-962-3442, Option 1
For Pediatric Endocrinology: 646-962-5437
This first CARES Foundation-designated Center of Excellence for congenital adrenal hyperplasia, serving patients of all ages from around the world, opened in New York City at the New York-Presbyterian Phyllis and David Komansky Center for Children’s Health Weill Cornell Medical Center in 2013. The team is headed up by Co-Medical Directors, Karen Lin Su, M.D. and Oksana Lekarev, D.O., & Surgical Director, Dix P. Poppas, M.D., FAAP, FACS. The Center offers a multi-disciplinary team of experts in the diagnosis and management of CAH for pediatric and adult patients. Services include medical treatment and lifelong follow-up care for patients with classical and non-classical CAH from birth to adulthood; surgical consultations and treatment; transition care for adolescents; psychological support; genetic counseling, prenatal testing, and nutritional support. The Center will also be providing educational programs and conducting research.
TWO NYP/WC SERVICES THAT MAY BE OF INTEREST TO YOU:
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 tumors are allowed to grow for long periods of time (usually years), they can permanently damage the testicles and cause irreversible infertility. If 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 in New York begin seeing these boys at 8 years old, performing the necessary tests and then they 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 they identify a tumor, 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 646-962-2316.
Children’s Hospital Los Angeles:
4650 Sunset Blvd. MS #61
Los Angeles, CA 90027
UCLA/Keck Medical Center:
8700 Beverly Blvd.
Los Angeles, CA 90048
Co-Medical Directors: Mitchell Geffner, M.D.and Mimi Kim, M.D., MSc.
Surgical Director is Roger De Filippo, MD.
COMPREHENSIVE CARE CENTER FOR CAH – Riley Hospital for Children/ Indiana University Health – Indianapolis IN
705 Riley Hospital Drive
Indianapolis, IN 46202
Comprehensive Care Center Coordinator – Heather Frady, RN
317-412-1206
hmfrady@iu.edu
Medical Director: Erica Eugster, M.D., Associate Medical Director: Todd Nebesio, M.D.
Surgical Director: Richard C. Rink, M.D.
COMPREHENSIVE CARE CENTER FOR CAH – Rutgers-Robert Wood Johnson Medical School (RWJMS), Child Health Center of New Jersey (CHINJ) – New Brunswick, New Jersey
Co-Medical Directors: Ian Marshall, M.D., Ahmed Khattab, M.D.,MSC
COMPREHENSIVE CARE CENTER FOR CAH – Children’s Health Medical Center/UT Southwestern Medical Center – Dallas, Texas
For appointments, contact Merritt Lamm or Emily Silva, 214-456-5980
Adult appointments: 214-645-2800
Pediatric Endocrinology: Perrin White, M.D. and Ming Yang, M.D.
Adult Endocrinology: Jessica Abramowitz, M.D. and Oksana Hamidi, D.O.
COMPREHENSIVE CARE CENTER FOR CAH – Children’s Hospital of Philadelphia/Penn Med – Philadelphia, PA
For appointments, 215-590-3174
Medical Director: Maria M. Vogiatzi, M.D.
Associate Director: Julia Karhlip, M.D.
Pediatric Urologist: Thomas Kolon, M.D.
Nurse/Care Coordinator: Maureen Butler, R.N.
COMPREHENSIVE CARE CENTER FOR CAH – Seattle Children’s Hospital and University of Washington Medical
Center – Seattle, Washington
Medical Director: Patricia Y. Fechner, M.D., FAAP
Co-Surgical Director: FAAP, Margarett Shnorhavorian, M.D.,MPH,FAAP,FACS
COMPREHENSIVE CARE CENTER FOR CAH – Cook Children’s Health Care System – Fort Worth, Texas
Medical Director: Paul Thornton, M.D.
CAH is an extremely difficult disorder to understand, diagnose and treat in a comprehensive manner. As noted by a CAH working group:
Despite over 50 years of experience with steroid replacement therapy, the management of congenital adrenal hyperplasia (CAH) remains difficult, and clinical practice varies substantially through the world … (Clayton, et al 2002)
More than five years later, this statement is still true, and a number of factors indicated that the time to address this disparity in care and lack of quality benchmarks is now:
In 2009 CARES Foundation hosted a meeting of the world’s leading clinicians in CAH as well as individuals and families affected by this condition to derive guidelines for the establishment of, and standards for the recognition and maintenance of, comprehensive clinical care centers for the treatment of CAH throughout the life cycle on September 21-22, 2009 in Bethesda, Maryland.
This meeting was supported by funds awarded by The New York-Mid-Atlantic Consortium for Genetic and Newborn Screening Services (NYMAC) and the National Newborn Screening and Genetics Resource Center (NNSGRC), with support from the Health Resources Services Administration (HRSA), US Department of Health and Human Services. The project is endorsed by the Endocrine Society, Lawson Wilkins Pediatric Endocrine Society (LWPES) and the Androgen Excess-Polycystic Ovary Syndrome Society (AE-PCOS).
The Comprehensive Care Centers for CAH were organized under published “Guidelines for the Development of Comprehensive Care Centers for Congenital Adrenal Hyperplasia: Guidance from the CARES Foundation Initiative” (IJPE2010).
CONTACT
2414 Morris Avenue, Ste 110
Union, NJ 07083
Phone: (908) 364-0272
Toll Free: (866) 227-3737
Fax: (908) 686-2019
contact@caresfoundation.org