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

Auchus, Richard J and Witchel, Selma Feldman and Leight, Kelly R and Aisenberg, Javier and Azziz, Ricardo and Bachega, Tânia A and Baker, Linda A and Baratz, Arlene B and Baskin, Laurence S and Berenbaum, Sheri A and Breault, David T and Cerame, Barbara I and Conway, Gerard S and Eugster, Erica A and Fracassa, Stephanie and Gearhart, John P and Geffner, Mitchell E and Harris, Katharine B and Hurwitz, Richard S and Katz, Aviva L and Kalro, Brinda N and Lee, Peter A and Alger Lin, Gretchen and Loechner, Karen J and Marshall, Ian and Merke, Deborah P and Migeon, Claude J and Miller, Walter L and Nenadovich, Tamara L and Oberfield, Sharon E and Pass, Kenneth A and Poppas, Dix P and Lloyd-Puryear, Michele A and Quigley, Charmian A and Riepe, Felix G and Rink, Richard C and Rivkees, Scott A and Sandberg, David E and Schaeffer, Traci L and Schlussel, Richard N and Schneck, Francis X and Seely, Ellen W and Snyder, Diane and Speiser, Phyllis W and Therrell, Bradford L and Vanryzin, Carol and Vogiatzi, Maria G and Wajnrajch, Michael P and White, Perrin C and Zuckerman, Alan E (2010) Guidelines for the Development of Comprehensive Care Centers for Congenital Adrenal Hyperplasia: Guidance from the CARES Foundation Initiative. Int J Pediatr Endocrinol, 2010. 275213 - ?.

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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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Item Type: Article
Status: Published
CreatorsEmailPitt UsernameORCID
Auchus, Richard J
Witchel, Selma Feldmansfs@pitt.eduSFS
Leight, Kelly R
Aisenberg, Javier
Azziz, Ricardo
Bachega, Tânia A
Baker, Linda A
Baratz, Arlene B
Baskin, Laurence S
Berenbaum, Sheri A
Breault, David T
Cerame, Barbara I
Conway, Gerard S
Eugster, Erica A
Fracassa, Stephanie
Gearhart, John P
Geffner, Mitchell E
Harris, Katharine B
Hurwitz, Richard S
Katz, Aviva Lalk70@pitt.eduALK70
Kalro, Brinda N
Lee, Peter A
Alger Lin, Gretchen
Loechner, Karen J
Marshall, Ian
Merke, Deborah P
Migeon, Claude J
Miller, Walter L
Nenadovich, Tamara L
Oberfield, Sharon E
Pass, Kenneth A
Poppas, Dix P
Lloyd-Puryear, Michele A
Quigley, Charmian A
Riepe, Felix G
Rink, Richard C
Rivkees, Scott A
Sandberg, David E
Schaeffer, Traci L
Schlussel, Richard N
Schneck, Francis Xfxs1@pitt.eduFXS1
Seely, Ellen W
Snyder, Diane
Speiser, Phyllis W
Therrell, Bradford L
Vanryzin, Carol
Vogiatzi, Maria G
Wajnrajch, Michael P
White, Perrin C
Zuckerman, Alan E
Date: 19 October 2010
Date Type: Acceptance
Journal or Publication Title: Int J Pediatr Endocrinol
Volume: 2010
Page Range: 275213 - ?
DOI or Unique Handle: 10.1155/2010/275213
Schools and Programs: School of Medicine > Obstetrics, Gynecology, and Reproductive Sciences
School of Medicine > Pediatrics
School of Medicine > Surgery
School of Medicine > Urology
Refereed: Yes
Date Deposited: 15 Nov 2016 20:35
Last Modified: 13 Oct 2017 19:55


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