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

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  • Auchus, Richard J
    • Other Affiliation: Division of Endocrinology, Department of Medicine, University of Texas Southwestern Medical School, Dallas, TX 75390, USA
  • Witchel, Selma
    • Other Affiliation: Division of Pediatric Endocrinology, Children's Hospital of Pittsburgh of UPMC, University of Pittsburgh School of Medicine, Pittsburgh, PA 15224, USA
  • Leight, Kelly R
    • Other Affiliation: CARES Foundation, Union, NJ 07083, USA
  • Aisenberg, Javier
    • Other Affiliation: Hackensack University Medical Center, NJ 07601, USA
  • Azziz, Ricardo
    • Other Affiliation: Medical College of Georgia, Augusta, GA 30912, USA
  • Bachega, Tânia A
    • Other Affiliation: University of Sao Paulo, Sao Paulo, Brazil
  • Baker, Linda A
    • Other Affiliation: Department of Urology, University of Texas Southwestern Medical Center, Dallas, TX 75390, USA
  • Baratz, Arlene B
    • Other Affiliation: Allegheny Radiology Associates, Allegheny General Hospital, Pittsburgh, PA 15212, USA
  • Baskin, Laurence S
    • Other Affiliation: Division of Pediatric Urology, University of California at San Francisco, San Francisco, CA 94143, USA
  • Berenbaum, Sheri A
    • Other Affiliation: Department of Psychology, Pennsylvania State University, University Park, PA 16802, USA
  • Breault, David T
    • Other Affiliation: Division of Endocrinology, Children's Hospital Boston, Boston, MA 02115, USA
  • Cerame, Barbara I
    • Other Affiliation: Atlantic Health Systems, Morristown Memorial Hospital, Morristown, NJ 07962, USA
  • Conway, Gerard S
    • Other Affiliation: Middlesex Hospital, University College London Hospitals, London, NW12PG, UK
  • Eugster, Erica A
    • Other Affiliation: Pediatric Endocrinology, Riley Hospital for Children, Indianapolis, IN 46202, USA
  • Fracassa, Stephanie
    • Other Affiliation: Consumer, New York, NY 12257, USA
  • Gearhart, John P
    • Other Affiliation: Department of Urology, Johns Hopkins Brady Urological Institute, Baltimore, MD 21287, USA
  • Geffner, Mitchell E
    • Other Affiliation: Division of Endocrinology, Children's Hospital Los Angeles, Los Angeles, CA 90027, USA
  • Harris, Katharine B
    • Other Affiliation: New York Mid-Atlantic Consortium for Genetics and Newborn Screening Services (NYMAC), Wadsworth Center, Albany, NY 12201, USA
  • Hurwitz, Richard S
    • Other Affiliation: Division of Pediatric Urology, Kaiser Permanente of LA, Los Angeles, CA 91402, USA
  • Katz, Aviva L
    • Other Affiliation: Department of Surgery, School of Medicine, Children's Hospital of Pittsburgh of UPMC, University of Pittsburgh School of Medicine, Pittsburgh, PA 15224, USA
  • Kalro, Brinda N
    • Other Affiliation: Department of Obstetrics & Gynecology, Magee Women's Hospital, University of Pittsburgh School of Medicine, Pittsburgh, PA 15213, USA
  • Lee, Peter A
    • Other Affiliation: Division of Pediatric Endocrinology, The Milton S. Hershey Medical Center, Pennsylvania State University College of Medicine, Hershey, PA 17033, USA
  • Alger Lin, Gretchen
    • Other Affiliation: Consumer, Las Vegas, NV 89104, USA
  • Loechner, Karen J
    • Other Affiliation: Dartmouth-Hitchcock Medical Center, Lebanon, NH 03756, USA
  • Marshall, Ian
    • Other Affiliation: Pediatric Endocrinology, Robert Wood Johnson University Hospital, New Brunswick, NJ 08901, USA
  • Merke, Deborah P
    • Other Affiliation: Pediatric Services, National Institutes of Health Clinical Center, Bethesda, MD 20892, USA
  • Migeon, Claude J
    • Other Affiliation: Division of Pediatric Endocrinology, Johns Hopkins Hospital, Baltimore, MD 21287, USA
  • Miller, Walter L
    • Other Affiliation: Division of Pediatric Endocrinology, University of California, San Francisco, San Francisco, CA 94143, USA
  • Nenadovich, Tamara L
    • Other Affiliation: Division of Pediatric Endocrinology, Children's Hospital of Pittsburgh of UPMC, Pittsburgh, PA 15224, USA
  • Oberfield, Sharon E
    • Other Affiliation: Department of Urology, Morgan Stanley Children's Hospital of New York-Presbyterian (MSCHONY), New York, NY 10032, USA
  • Pass, Kenneth A
    • Other Affiliation: New York State Department of Health, Wadsworth Center, Albany, NY 12201, USA
  • Poppas, Dix P
    • Other Affiliation: Pediatric Urology, New York Presbyterian Weill Cornell Medical Center, New York, NY 10065, USA
  • Lloyd-Puryear, Michele A
    • Other Affiliation: Health Resources and Services Administration (HRSA), Rockville, MD 20857, USA
  • Quigley, Charmian A
    • Other Affiliation: Lilly Research Laboratories, Lilly Corporate Center, Indianapolis, IN 46285, USA
  • Riepe, Felix G
    • Other Affiliation: University Hospital Schleswig-Holstein, Campus Kiel, Kiel, 24105, Germany
  • Rink, Richard C
    • Other Affiliation: Department of Urology, Riley Hospital for Children, Indiana University School of Medicine, Indianapolis, IN 46202, USA
  • Rivkees, Scott A
    • Other Affiliation: Pediatric Endocrinology, Yale University School of Medicine, New Haven, CT 06510, USA
  • Sandberg, David E
    • Other Affiliation: Division of Behavioral Health, Department of Pediatrics, University of Michigan Medical School, Ann Arbor, MI 48109, USA
  • Schaeffer, Traci L
    • Other Affiliation: Pediatric Endocrinology, Oklahoma University Health Sciences Center, Oklahoma City, OK 73104, USA
  • Schlussel, Richard N
    • Other Affiliation: Department of Urology, Morgan Stanley Children's Hospital of New York-Presbyterian (MSCHONY), New York, NY 10032, USA
  • Schneck, Francis X
    • Other Affiliation: Department of Urology, Children's Hospital of Pittsburgh of UMPC, University of Pittsburgh School of Medicine, Pittsburgh, PA 15224, USA
  • Seely, Ellen W
    • Other Affiliation: Division of Endocrinology, Brigham and Women's Hospital, Boston, MA 02115, USA
  • Snyder, Diane
    • Other Affiliation: Consumer, MD, USA
  • Speiser, Phyllis W
    • Other Affiliation: Division of Pediatric Endocrinology, Steve and Alexandra Cohen Children's Medical Center of New York, New Hyde Park, NY 11040, USA
  • Therrell, Bradford L
    • Other Affiliation: National Newborn Screening/Genetics Resource Center (NNSGRC), University of Texas at San Antonio, San Antonio, TX 78229, USA
  • VanRyzin, Carol
    • Other Affiliation: Pediatric Services, National Institutes of Health Clinical Center, Bethesda, MD 20892, USA
  • Vogiatzi, Maria G
    • Other Affiliation: Department of Pediatrics, Cornell-Weill New York Presbyterian Hospital, New York, NY 10065, USA
  • White, Perrin C
    • Other Affiliation: Division of Pediatric Endocrinology, University of Texas Southwestern Medical Center, Dallas, TX 75390, USA
  • Wajnrajch, Michael P
    • Other Affiliation: Pfizer Global Pharmaceuticals, New York, NY 10017, USA
  • Zuckerman, Alan E
    • Other Affiliation: Georgetown University Hospital, Washington, DC 20007, USA
Abstract
  • 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.
Date of publication
DOI
Identifier
Resource type
  • Article
Rights statement
  • In Copyright
Rights holder
  • Richard J Auchus et al.; licensee BioMed Central Ltd.
Journal title
  • International Journal of Pediatric Endocrinology
Journal volume
  • 2010
Journal issue
  • 1
Page start
  • 275213
Language
  • English
Is the article or chapter peer-reviewed?
  • Yes
ISSN
  • 1687-9856
Bibliographic citation
  • International Journal of Pediatric Endocrinology. 2010 Nov 11;2010(1):275213
Publisher
  • BioMed Central Ltd
Access right
  • Open Access
Date uploaded
  • March 18, 2016

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