TY - JOUR
AU - R. J. Auchus
AU - S. F. Witchel
AU - K. R. Leight
AU - J. Aisenberg
AU - R. Azziz
AU - T. A. Bachega
AU - L. A. Baker
AU - A. B. Baratz
AU - L. S. Baskin
AU - S. A. Berenbaum
AU - D. T. Breault
AU - B. I. Cerame
AU - G. S. Conway
AU - E. A. Eugster
AU - S. Fracassa
AU - J. P. Gearhart
AU - M. E. Geffner
AU - K. B. Harris
AU - R. S. Hurwitz
AU - A. L. Katz
AU - B. N. Kalro
AU - P. A. Lee
AU - Alger Lin
AU - K. J. Loechner
AU - I. Marshall
AU - D. P. Merke
AU - C. J. Migeon
AU - W. L. Miller
AU - T. L. Nenadovich
AU - S. E. Oberfield
AU - K. A. Pass
AU - D. P. Poppas
AU - M. A. Lloyd-Puryear
AU - C. A. Quigley
AU - F. G. Riepe
AU - R. C. Rink
AU - S. A. Rivkees
AU - D. E. Sandberg
AU - T. L. Schaeffer
AU - R. N. Schlussel
AU - F. X. Schneck
AU - E. W. Seely
AU - D. Snyder
AU - P. W. Speiser
AU - B. L. Therrell
AU - C. Vanryzin
AU - M. G. Vogiatzi
AU - M. P. Wajnrajch
AU - P. C. White
AU - A. E. Zuckerman
A1 - 
AB - 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.
BT - International journal of pediatric endocrinology
C5 - Medical Home
CY - Egypt
JF - International journal of pediatric endocrinology
N2 - 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.
PP - Egypt
PY - 2010
SN - 1687-9848 (Print); 1687-9856 (Electronic)
SP - 275213
T1 - Guidelines for the development of comprehensive care centers for congenital adrenal hyperplasia: Guidance from the CARES Foundation Initiative
T2 - International journal of pediatric endocrinology
TI - Guidelines for the development of comprehensive care centers for congenital adrenal hyperplasia: Guidance from the CARES Foundation Initiative
U1 - Medical Home
U2 - 21274448
VL - 2010
VO - 1687-9848 (Print); 1687-9856 (Electronic)
Y1 - 2010
ER -