Guidelines
Guidelines for the Development of Comprehensive Care Centers for Congenital Adrenal Hyperplasia: Guidance from the CARES Foundation Initiative
1 Division of Endocrinology, Department of Medicine, University of Texas Southwestern Medical School, Dallas, TX 75390, USA
2 Division of Pediatric Endocrinology, Children's Hospital of Pittsburgh of UPMC, University of Pittsburgh School of Medicine, Pittsburgh, PA 15224, USA
3 CARES Foundation, Union, NJ 07083, USA
4 Hackensack University Medical Center, NJ 07601, USA
5 Medical College of Georgia, Augusta, GA 30912, USA
6 University of Sao Paulo, Sao Paulo, Brazil
7 Department of Urology, University of Texas Southwestern Medical Center, Dallas, TX 75390, USA
8 Allegheny Radiology Associates, Allegheny General Hospital, Pittsburgh, PA 15212, USA
9 Division of Pediatric Urology, University of California at San Francisco, San Francisco, CA 94143, USA
10 Department of Psychology, Pennsylvania State University, University Park, PA 16802, USA
11 Division of Endocrinology, Children's Hospital Boston, Boston, MA 02115, USA
12 Atlantic Health Systems, Morristown Memorial Hospital, Morristown, NJ 07962, USA
13 Middlesex Hospital, University College London Hospitals, London, NW12PG, UK
14 Pediatric Endocrinology, Riley Hospital for Children, Indianapolis, IN 46202, USA
15 Consumer, New York, NY 12257, USA
16 Department of Urology, Johns Hopkins Brady Urological Institute, Baltimore, MD 21287, USA
17 Division of Endocrinology, Children's Hospital Los Angeles, Los Angeles, CA 90027, USA
18 New York Mid-Atlantic Consortium for Genetics and Newborn Screening Services (NYMAC), Wadsworth Center, Albany, NY 12201, USA
19 Division of Pediatric Urology, Kaiser Permanente of LA, Los Angeles, CA 91402, USA
20 Department of Surgery, School of Medicine, Children's Hospital of Pittsburgh of UPMC, University of Pittsburgh, Pittsburgh, PA 15224, USA
21 Department of Obstetrics & Gynecology, Magee Women's Hospital, University of Pittsburgh School of Medicine, Pittsburgh, PA 15213, USA
22 Division of Pediatric Endocrinology, The Milton S. Hershey Medical Center, Pennsylvania State University College of Medicine, Hershey, PA 17033, USA
23 Consumer, Las Vegas, NV 89104, USA
24 Dartmouth-Hitchcock Medical Center, Lebanon, NH 03756, USA
25 Pediatric Endocrinology, Robert Wood Johnson University Hospital, New Brunswick, NJ 08901, USA
26 Pediatric Services, National Institutes of Health Clinical Center, Bethesda, MD 20892, USA
27 Division of Pediatric Endocrinology, Johns Hopkins Hospital, Baltimore, MD 21287, USA
28 Division of Pediatric Endocrinology, University of California, San Francisco, San Francisco, CA 94143, USA
29 Division of Pediatric Endocrinology, Children's Hospital of Pittsburgh of UPMC, Pittsburgh, PA 15224, USA
30 Department of Urology, Morgan Stanley Children's Hospital of New York-Presbyterian (MSCHONY), New York, NY 10032, USA
31 New York State Department of Health, Wadsworth Center, Albany, NY 12201, USA
32 Pediatric Urology, New York Presbyterian Weill Cornell Medical Center, New York, NY 10065, USA
33 Health Resources and Services Administration (HRSA), Rockville, MD 20857, USA
34 Lilly Research Laboratories, Lilly Corporate Center, Indianapolis, IN 46285, USA
35 University Hospital Schleswig-Holstein, Campus Kiel, Kiel, 24105, Germany
36 Department of Urology, Riley Hospital for Children, Indiana University School of Medicine, Indianapolis, IN 46202, USA
37 Pediatric Endocrinology, Yale University School of Medicine, New Haven, CT 06510, USA
38 Division of Behavioral Health, Department of Pediatrics, University of Michigan Medical School, Ann Arbor, MI 48109, USA
39 Pediatric Endocrinology, Oklahoma University Health Sciences Center, Oklahoma City, OK 73104, USA
40 Department of Urology, Children's Hospital of Pittsburgh of UPMC, University of Pittsburgh School of Medicine, Pittsburgh, PA 15224, USA
41 Division of Endocrinology, Brigham and Women's Hospital, Boston, MA 02115, USA
42 Consumer, MD, USA
43 Division of Pediatric Endocrinology, Steve and Alexandra Cohen Children's Medical Center of New York, New Hyde Park, NY 11040, USA
44 National Newborn Screening/Genetics Resource Center (NNSGRC), University of Texas at San Antonio, San Antonio, TX 78229, USA
45 Department of Pediatrics, Cornell-Weill New York Presbyterian Hospital, New York, NY 10065, USA
46 Pfizer Global Pharmaceuticals, New York, NY 10017, USA
47 Division of Pediatric Endocrinology, University of Texas Southwestern Medical Center, Dallas, TX 75390, USA
48 Georgetown University Hospital, Washington, DC 20007, USA
International Journal of Pediatric Endocrinology 2010, 2010:275213 doi:10.1155/2010/275213
Published: 11 November 2010Abstract
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.
