title: Guidelines for the Development of Comprehensive Care Centers for Congenital Adrenal Hyperplasia: Guidance from the CARES Foundation Initiative.
abstract: Patients with rare and complex diseases such as congenital adrenal hyperplasia (CAH) often receive fragmented and inadequate care unless efforts are coordinated among providers. Translating the concepts of the medical home and comprehensive health care for individuals with CAH offers many benefits for the affected individuals and their families. This manuscript represents the recommendations of a 1.5 day meeting held in September 2009 to discuss the ideal goals for comprehensive care centers for newborns, infants, children, adolescents, and adults with CAH. Participants included pediatric endocrinologists, internal medicine and reproductive endocrinologists, pediatric urologists, pediatric surgeons, psychologists, and pediatric endocrine nurse educators. One unique aspect of this meeting was the active participation of individuals personally affected by CAH as patients or parents of patients. Representatives of Health Research and Services Administration (HRSA), New York-Mid-Atlantic Consortium for Genetics and Newborn Screening Services (NYMAC), and National Newborn Screening and Genetics Resource Center (NNSGRC) also participated. Thus, this document should serve as a "roadmap" for the development phases of comprehensive care centers (CCC) for individuals and families affected by CAH.
authors.affiliation: Division of Endocrinology, Department of Medicine, University of Texas Southwestern Medical School, Dallas, TX 75390, USA.
authors.forename: Richard J
authors.initials: RJ
authors.lastname: Auchus
authors.forename: Selma Feldman
authors.initials: SF
authors.lastname: Witchel
authors.forename: Kelly R
authors.initials: KR
authors.lastname: Leight
authors.forename: Javier
authors.initials: J
authors.lastname: Aisenberg
authors.forename: Ricardo
authors.initials: R
authors.lastname: Azziz
authors.forename: Tânia A
authors.initials: TA
authors.lastname: Bachega
authors.forename: Linda A
authors.initials: LA
authors.lastname: Baker
authors.forename: Arlene B
authors.initials: AB
authors.lastname: Baratz
authors.forename: Laurence S
authors.initials: LS
authors.lastname: Baskin
authors.forename: Sheri A
authors.initials: SA
authors.lastname: Berenbaum
authors.forename: David T
authors.initials: DT
authors.lastname: Breault
authors.forename: Barbara I
authors.initials: BI
authors.lastname: Cerame
authors.forename: Gerard S
authors.initials: GS
authors.lastname: Conway
authors.forename: Erica A
authors.initials: EA
authors.lastname: Eugster
authors.forename: Stephanie
authors.initials: S
authors.lastname: Fracassa
authors.forename: John P
authors.initials: JP
authors.lastname: Gearhart
authors.forename: Mitchell E
authors.initials: ME
authors.lastname: Geffner
authors.forename: Katharine B
authors.initials: KB
authors.lastname: Harris
authors.forename: Richard S
authors.initials: RS
authors.lastname: Hurwitz
authors.forename: Aviva L
authors.initials: AL
authors.lastname: Katz
authors.forename: Brinda N
authors.initials: BN
authors.lastname: Kalro
authors.forename: Peter A
authors.initials: PA
authors.lastname: Lee
authors.forename: Gretchen
authors.initials: G
authors.lastname: Alger Lin
authors.forename: Karen J
authors.initials: KJ
authors.lastname: Loechner
authors.forename: Ian
authors.initials: I
authors.lastname: Marshall
authors.forename: Deborah P
authors.initials: DP
authors.lastname: Merke
authors.forename: Claude J
authors.initials: CJ
authors.lastname: Migeon
authors.forename: Walter L
authors.initials: WL
authors.lastname: Miller
authors.forename: Tamara L
authors.initials: TL
authors.lastname: Nenadovich
authors.forename: Sharon E
authors.initials: SE
authors.lastname: Oberfield
authors.forename: Kenneth A
authors.initials: KA
authors.lastname: Pass
authors.forename: Dix P
authors.initials: DP
authors.lastname: Poppas
authors.forename: Michele A
authors.initials: MA
authors.lastname: Lloyd-Puryear
authors.forename: Charmian A
authors.initials: CA
authors.lastname: Quigley
authors.forename: Felix G
authors.initials: FG
authors.lastname: Riepe
authors.forename: Richard C
authors.initials: RC
authors.lastname: Rink
authors.forename: Scott A
authors.initials: SA
authors.lastname: Rivkees
authors.forename: David E
authors.initials: DE
authors.lastname: Sandberg
authors.forename: Traci L
authors.initials: TL
authors.lastname: Schaeffer
authors.forename: Richard N
authors.initials: RN
authors.lastname: Schlussel
authors.forename: Francis X
authors.initials: FX
authors.lastname: Schneck
authors.forename: Ellen W
authors.initials: EW
authors.lastname: Seely
authors.forename: Diane
authors.initials: D
authors.lastname: Snyder
authors.forename: Phyllis W
authors.initials: PW
authors.lastname: Speiser
authors.forename: Bradford L
authors.initials: BL
authors.lastname: Therrell
authors.forename: Carol
authors.initials: C
authors.lastname: Vanryzin
authors.forename: Maria G
authors.initials: MG
authors.lastname: Vogiatzi
authors.forename: Michael P
authors.initials: MP
authors.lastname: Wajnrajch
authors.forename: Perrin C
authors.initials: PC
authors.lastname: White
authors.forename: Alan E
authors.initials: AE
authors.lastname: Zuckerman