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Open Access Guidelines

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

Richard J Auchus1*, Selma Feldman Witchel2, Kelly R Leight3, Javier Aisenberg4, Ricardo Azziz5, Tânia A Bachega6, Linda A Baker7, Arlene B Baratz8, Laurence S Baskin9, Sheri A Berenbaum10, David T Breault11, Barbara I Cerame12, Gerard S Conway13, Erica A Eugster14, Stephanie Fracassa15, John P Gearhart16, Mitchell E Geffner17, Katharine B Harris18, Richard S Hurwitz19, Aviva L Katz20, Brinda N Kalro21, Peter A Lee22, Gretchen Alger Lin23, Karen J Loechner24, Ian Marshall25, Deborah P Merke26, Claude J Migeon27, Walter L Miller28, Tamara L Nenadovich29, Sharon E Oberfield30, Kenneth A Pass31, Dix P Poppas32, Michele A Lloyd-Puryear33, Charmian A Quigley34, Felix G Riepe35, Richard C Rink36, Scott A Rivkees37, David E Sandberg38, Traci L Schaeffer39, Richard N Schlussel30, Francis X Schneck40, Ellen W Seely41, Diane Snyder42, Phyllis W Speiser43, Bradford L Therrell44, Carol VanRyzin26, Maria G Vogiatzi45, Michael P Wajnrajch46, Perrin C White47 and Alan E Zuckerman48

Author Affiliations

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

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International Journal of Pediatric Endocrinology 2010, 2010:275213  doi:10.1155/2010/275213

Published: 11 November 2010

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.