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International Journal of Pediatric Endocrinology
Published in: International Journal of Pediatric Endocrinology 1/2010

Open Access 01-12-2010 | Guidelines

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

Authors: Richard J. Auchus, Selma Feldman Witchel, Kelly R. Leight, Javier Aisenberg, Ricardo Azziz, Tânia A. Bachega, Linda A. Baker, Arlene B. Baratz, Laurence S. Baskin, Sheri A. Berenbaum, David T. Breault, Barbara I. Cerame, Gerard S. Conway, Erica A. Eugster, Stephanie Fracassa, John P. Gearhart, Mitchell E. Geffner, Katharine B. Harris, Richard S. Hurwitz, Aviva L. Katz, Brinda N. Kalro, Peter A. Lee, Gretchen Alger Lin, Karen J. Loechner, Ian Marshall, Deborah P. Merke, Claude J. Migeon, Walter L. Miller, Tamara L. Nenadovich, Sharon E. Oberfield, Kenneth A. Pass, Dix P. Poppas, Michele A. Lloyd-Puryear, Charmian A. Quigley, Felix G. Riepe, Richard C. Rink, Scott A. Rivkees, David E. Sandberg, Traci L. Schaeffer, Richard N. Schlussel, Francis X. Schneck, Ellen W. Seely, Diane Snyder, Phyllis W. Speiser, Bradford L. Therrell, Carol VanRyzin, Maria G. Vogiatzi, Michael P. Wajnrajch, Perrin C. White, Alan E. Zuckerman

Published in: International Journal of Pediatric Endocrinology | Issue 1/2010

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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.
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Metadata
Title
Guidelines for the Development of Comprehensive Care Centers for Congenital Adrenal Hyperplasia: Guidance from the CARES Foundation Initiative
Authors
Richard J. Auchus
Selma Feldman Witchel
Kelly R. Leight
Javier Aisenberg
Ricardo Azziz
Tânia A. Bachega
Linda A. Baker
Arlene B. Baratz
Laurence S. Baskin
Sheri A. Berenbaum
David T. Breault
Barbara I. Cerame
Gerard S. Conway
Erica A. Eugster
Stephanie Fracassa
John P. Gearhart
Mitchell E. Geffner
Katharine B. Harris
Richard S. Hurwitz
Aviva L. Katz
Brinda N. Kalro
Peter A. Lee
Gretchen Alger Lin
Karen J. Loechner
Ian Marshall
Deborah P. Merke
Claude J. Migeon
Walter L. Miller
Tamara L. Nenadovich
Sharon E. Oberfield
Kenneth A. Pass
Dix P. Poppas
Michele A. Lloyd-Puryear
Charmian A. Quigley
Felix G. Riepe
Richard C. Rink
Scott A. Rivkees
David E. Sandberg
Traci L. Schaeffer
Richard N. Schlussel
Francis X. Schneck
Ellen W. Seely
Diane Snyder
Phyllis W. Speiser
Bradford L. Therrell
Carol VanRyzin
Maria G. Vogiatzi
Michael P. Wajnrajch
Perrin C. White
Alan E. Zuckerman
Publication date
01-12-2010
Publisher
BioMed Central
Published in
International Journal of Pediatric Endocrinology / Issue 1/2010
Electronic ISSN: 1687-9856
DOI
https://doi.org/10.1155/2010/275213

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