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Press Room>Archive>Comprehensive Care Centers Meeting
CARES FOUNDATION HOSTS MEETING TO WRITE GUIDELINES FOR THE ESTABLISHMENT OF COMPREHENSIVE CARE CENTERS FOR CONGENITAL ADRENAL HYPERPLASIA
(UNION, NJ, October 1, 2009) – CARES Foundation, an organization devoted to research, education and support for Congenital Adrenal Hyperplasia (CAH), hosted a meeting to formulate guidelines for Comprehensive Care Centers (CCC) for patients and families affected by CAH September 21-22, 2009 in Bethesda, Maryland.
“At present there is a significant disparity in the quality and comprehensiveness of care that patients affected by CAH receive,” noted Dina M. Matos, CARES Foundation executive director. “There are no centers in the United States recognized as specializing in the care of individuals with this disorder; much less provide collaboration between the different medical experts needed to care for a patient with CAH. Moreover, clinicians who are less experienced with CAH, or who serve a geographically isolated population, have no recognized ‘expert’- a person or a protocol -- to turn to for advice and consultation on the diagnosis and care of their patients with CAH. Adult patients are particularly underserved. While they may have received effective care during the childhood years, once they reach adulthood they often fall off the radar. Comprehensive Care Centers will provide access to specialists who will meet patient’s changing needs ensuring coordinated care from diagnosis throughout their lifetime. In addition, the Centers will provide a pool of research subjects that will be critical to our continued pursuit of a cure for CAH.”
Over the past eight years, CARES Foundation has worked tirelessly to ensure that every baby in America has a chance at a healthy start through advocating for expanded newborn screening including testing for CAH. One of the 29 core conditions recommended for testing by the American College of Medical Genetics (ACMG), as of 2008, CAH is now screened for at birth as a part of the newborn screening panel in all 50 states. We are saving our babies. The time has come for us to follow through and keep them healthy throughout their lives.
To this end, this past week, the world’s leading clinicians in CAH as well as individuals and families affected by this condition convened to derive guidelines for the establishment of, and standards for the recognition and maintenance of, comprehensive clinical care centers for the treatment of CAH throughout the life cycle.
Relevant topics discussed during this conference included:
- comprehensive multi-disciplinary patient-centered care throughout the lifecycle
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efficiency, sensitivity, and specificity of newborn screening
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diagnosis and molecular genetics
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psycho-social-behavioral support systems and services
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surgical involvement, interventions, and outcomes for affected females
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seamless transition to adult care providers (adult and reproductive endocrinologists and surgeons)
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advocacy, education, research, and training (patients, families, health care providers, etc.)
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bone health and other potential co-morbidities
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preconception counseling
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informatics, electronic medical records, registry
This meeting was supported by funds awarded by The New York-Mid-Atlantic Consortium for Genetic and Newborn Screening Services (NYMAC) and the National Newborn Screening and Genetics Resource Center (NNSGRC), with support from the Health Resources Services Administration (HRSA), US Department of Health and Human Services. The project is endorsed by the Endocrine Society, Lawson Wilkins Pediatric Endocrine Society (LWPES) and the Androgen Excess-Polycystic Ovary Syndrome Society (AE-PCOS).
About Congenital Adrenal Hyperplasia (CAH)
CAH is a family of inherited disorders affecting the adrenal gland. The health effects of adrenal insufficiency, which is the cardinal feature of CAH, range from mild (hirsutism and acne) to severe (premature puberty, genital anomalies, infertility, depression, insulin resistance, salt-wasting, adrenal crisis and death) and while complex, can be managed with adequate understanding and medical treatment of the disorder. The most common recessive genetic disease identified to date, CAH occurs at extremely high rates in certain ethnic populations, most notably the Ashkenazi Jewish (1 in 27), Hispanic (1 in 40), and Italian (1 in 300) communities. CAH is severely under diagnosed and this fact, combined with the multi-symptom profile and potential life-threatening aspects of the disorder, renders CAH a growing health concern in this country. All 50 states and the District of Columbia conduct newborn screening (NBS) for CAH. These NBS programs identify the majority of infants with salt-losing and simple virilizing forms of CAH. Individuals affected by the milder “non-classical” form of CAH are identified later when they present, typically with symptoms of androgen excess, to health care providers.
About CARES Foundation, Inc.
CARES Foundation is committed to improving the lives of families and individuals affected by Congenital Adrenal Hyperplasia (CAH) through proactively advancing research for a better understanding of CAH, better treatments and a cure; educating the public and healthcare professionals about all forms of CAH; advocating for universal newborn screening as well as immediate, appropriate emergency medical treatment, and comprehensive lifelong care; and providing support services and resources vital to the CAH community worldwide.
Contact:
Dina M. Matos, Executive Director (dina@caresfoundation.org)
CARES Foundation, Inc.
2414 Morris Ave., Suite 110
Union, NJ 07083
Phone: 908-364-0272
Toll-free: 866-227-3737
URL: www.caresfoundation.org
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