Georgia CTSA’s Clinical Research Centers (GCRCs) and the Pediatric Research Center at Children’s Healthcare of Atlanta are proud to celebrate the Metabolic Camp’s 25th anniversary. The Metabolic Camp for girls and women with the rare disorders of phenylketonuria (PKU) and maple syrup urine disease (MSUD) will be held on June 17-22, 2019 at the Emory University campus.
Metabolic Camp offers a holistic approach to the nutrition management of PKU and MSUD. For more than two decades, the model research-based camp has been empowering adolescent girls and young women to make healthy choices and take charge of their futures as they live, learn, and have fun in a supportive camp environment.
Maternal PKU is important in the pregnancy outcomes if the girls are not on a compliant diet during pregnancy. If not controlled, these negative outcomes in nonadherent patients can negate the positive effects of population-based newborn screening. The inspiration for the camp came from Dr. Rani Singh, a world-expert metabolic dietitian and professor of Human Genetics and Pediatrics at Emory University. Dr. Singh noticed, especially during adolescence, patients and their families struggled with the impact of growing independence and changing lifestyle needs on patients’ ability to meet their diet prescriptions and maintain their treatment goals.
Dr. Singh explains, “My team and I wanted to equip girls and young women to independently manage their diet and to improve their compliance. In addition, there was an urgent need for programs educating young girls with PKU about the effect of high Phe levels during pregnancy and the potential impact on a growing fetus.”
An optional, unique feature of the camp is the ability to conduct research studies for young women with PKU and MSUD. Dr. Singh continues, “We would not be able to accomplish the research we have across the years without the assistance of Emory University Hospital GCRC program director Dr. Thomas Ziegler and Dr. Eric Felner at the Georgia CTSA-supported Emory Pediatric Research Center and their hard-working staff.”
Research conducted during previous camps supports:
How the special diets of individuals with PKU and MSUD affect the body and brain
Changes in bone health
Identifying biomarkers for monitor Phe levels in the clinic
Optimizing test devices for monitoring Phe levels at home
Dr. Rebecca Thomas, the GCRCs director of Clinical Research Nursing remarks, “All clinical research done during the camp is focused on the interventions related to the transition to adulthood, pregnancy, quality of life, and overall health outcomes.”
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Georgia CTSA’s multi-site Georgia CTSA Clinical Research Centers (GCRCs) is a multilayered, flexible, and geographically distributed network created to meet the needs of translational and clinical investigators from Emory University, MSM, UGA, Georgia Tech, and Children’s Healthcare of Atlanta (Children’s). The GCRCs offers dedicated space and a variety of resources ranging from core laboratory services to a bionutrition unit to support the research process at a subsidized cost. Clinical sites, including nursing services, are located at Emory University Hospital, Grady Memorial Hospital, UGA, MSM, Children’s, and Emory University Midtown.
The Georgia CTSA is a statewide partnership between Emory, MSM, Georgia Tech, and UGA and is one of over 50 in a national consortium striving to improve the way biomedical research is conducted across the country. The consortium, funded through the National Center for Advancing Translational Sciences (NCATS) and the National Institutes of Health’s Clinical and Translational Science Awards, shares a common vision to translate laboratory discoveries into treatments for patients, engage communities in clinical research efforts, and train the next generation of clinical investigators.