Over 60 campers and staff attended the 25th Metabolic Camp on June 17-22, 2019 at the Emory University campus. Georgia CTSA’s Clinical Research Centers (GCRCs) and the Pediatric Research Center at Children’s Healthcare of Atlanta were pleased to offer continued help with the camp throughout the years.
Metabolic Camp offers a holistic approach to the nutrition management of PKU and MSUD – empowering females age 12 and older to make healthy choices and take charge of their futures as they live, learn, and have fun in a supportive camp environment.
Dietary adherence is important during pregnancy in women with PKU to prevent serious adverse outcomes in the baby, known as Maternal PKU syndrome. If the women are non-compliant with diet during pregnancy, these negative outcomes 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 observes, “While identification of genetic metabolic disorders through population-based newborn screening is progressing, it is necessary to keep pace with access to nutrition education, medical foods (specialized formulas), and research to optimize the benefits of the newborn screening program, as diet is the primary treatment for these rare disorders for now as new treatments emerge.”
The camp’s main goals are to:
- Teach the importance of nutrition and help the campers develop diet self-management skills
- Review the treatment recommendations of PKU and MSUD prior to and during pregnancy
- Share experience and make new friends with other young women who have PKU or MSUD
- Research the impact of the above interventions on the transition to adulthood, pregnancy, quality of life, and overall health outcomes
An optional, unique feature of the camp is the rare opportunity to conduct research studies for young women with PKU and MSUD. Dr. Rebecca Thomas, the GCRCs director of Clinical Research Nursing comments, “The 25th anniversary of the Metabolic Camp marks the importance of this national camp both as an outreach and research effort, and this program is something our nurses look forward to every year.”
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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.