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:

• As diagnosis and clinical care improves, there is a growing population of adolescent and adult patients with CAH. However, at present there are no centers in the United States recognized as specializing in the care of teens and adults with this disorder. (Indeed, there are no established criteria upon which such a claim could currently be made). Clinicians who are less experienced with CAH, or who serve a geographically isolated population, have no recognized “expert”- be this a person or a protocol — to turn to for advice and consultation on the diagnosis and care of their CAH patients. The result is significant disparity in the quality and comprehensiveness of care that patients receive.
• As we enter into the era where long-term follow-up on newborn screening (NBS) is an integral part of the NBS system, comprehensive care centers for lifelong care will become necessary for CAH.
• For the purpose of the NBS system, and any kind of quality assurance, we need to have guidelines upon which to evaluate the effectiveness of long-term follow-up. There also need to be some standards that cut across geographic and regional boundaries in order to compare treatment regimens and practices that lead to better health outcomes.
• One of the goals of long-term follow-up is to create opportunities for clinical and translational research – this requires a large cohort of patients being followed and monitored on a variety of parameters in a longitudinal manner. Under the current model, CAH patients are spread out both geographically and across medical specialists, with no published guidelines for how – or even that—there be a primary clinician overseeing the disparate therapies. Subspecialists need a roadmap for how to communicate with each other in the care of a CAH patient, and there needs to be a master plan as to how individuals should be treated and monitored throughout the life cycle. Thus, the creation of the Centers of Excellence comprehensive care centers for CAH. The care centers in New York, Los Angeles and Indianapolis also offer surgical expertise.

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).