Guidelines for the Development of Comprehensive Care Centers for Congenital Adrenal Hyperplasia: Guidance from the CARES Foundation Initiative
Year: 2010
Type: article
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.
DOI: 10.1155/2010/275213
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
Institutions: The University of Texas Southwestern Medical Center, University of Pittsburgh, Children's Hospital of Pittsburgh, University of Pittsburgh Medical Center, Cares Foundation, Hackensack University Medical Center, Augusta University, Universidade de São Paulo, Allegheny General Hospital, University of California, San Francisco, Pennsylvania State University, Boston Children's Hospital, Morristown Medical Center, Atlantic Health System, University College London, Riley Hospital for Children, Johns Hopkins University, Johns Hopkins Medicine, Johns Hopkins Hospital, Children's Hospital Los Angeles, Wadsworth Center, Kaiser Permanente, Magee-Womens Hospital, Penn State Milton S. Hershey Medical Center, Dartmouth–Hitchcock Medical Center, Robert Wood Johnson University Hospital, National Institutes of Health Clinical Center, Morgan Stanley Children's Hospital, New York State Department of Health, Weill Cornell Medical Center, Health Resources and Services Administration, Eli Lilly (United States), University Hospital Schleswig-Holstein, Indiana University School of Medicine, Yale University, University of Michigan, Michigan Medicine, OU Health, University of Oklahoma Health Sciences Center, UPMC Health System, Brigham and Women's Hospital, Cohen Children's Medical Center, Schneider Children's Hospital, The University of Texas at San Antonio, NewYork–Presbyterian Hospital, Weill Cornell Medicine, Pfizer (United States), Georgetown University, Georgetown University Medical Center
Language: English
Subfield: Endocrinology, Diabetes and Metabolism
Field: Medicine
Domain: Health Sciences
Open Access status: gold
Estimated APC paid: $2,790
OpenAlex ID: W2107781238