Guidelines for the Development of Comprehensive Care Centers for Congenital Adrenal Hyperplasia: Guidance from the CARES Foundation Initiative

Patients with rare and complex diseases often receive fragmented and inadequate care unless efforts are coordinated among providers. For some diseases such as cancer and cystic fibrosis, the development of comprehensive care centers (CCCs) has dramatically improved outcomes and quality of life [1]. In conceptualizing CCCs for the treatment of congenital adrenal hyperplasia (CAH) the Congenital Adrenal hyperplasia Research, Education, and Support (CARES) Foundation, Inc., organized a conference attended by pediatric endocrinologists, medical endocrinologists, reproductive endocrinologists, pediatric urologists/surgeons, endocrine nurses, psychologists, and consumers (affected individuals and their family members). The goal of the conference was to discuss creation of an environment focused on health and quality of life for patients with CAH and their families [2]. The diverse backgrounds of the participants were fundamental to the planning process and influenced the idealized design of these centers.A CCC will be most often located in an academic-oriented tertiary-care hospital and consists of multiple healthcare providers in close geographic proximity to enable easy access for patients and their families. These healthcare providers should be united in their common interest and expertise in CAH. Research, training, and advocacy should be inherent parts of the CCC, and the CCCs will be in an ideal position to collect outcomes data to improve patient care and to support research (Table 1).Community health care providers and state newborn screening programs should be able to make referrals to the CCC [3]. Establishment of effective and efficient active lines of communication with local hospitals, state newborn screening programs, and regional Primary Care Practitioners (PCPs) should facilitate referrals and longitudinal care. A single intake point through a clinical care coordinator should be established and advertised. Generally, this will be the telephone number for a