Emory Metabolic Nutrition Program awarded $1.2M for nutrition therapy program for inherited metabolic disorders

Woodruff Health Sciences Center | Nov. 1, 2016

Contact

Holly Korschun
404-727-3990
hkorsch@emory.edu

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“This new medical foods program will help overcome barriers to treatment, resulting in improved outcomes and less frustration both for families and providers,” says Rani H. Singh, PhD, RD, LD, who is principal investigator for the project.

The Georgia Department of Public Health has awarded approximately $1.2 million to the Metabolic Nutrition Program in the Department of Human Genetics at Emory University School of Medicine. The grant will enable the launch of a medical foods program called Medical Nutrition Therapy for Prevention (MNT for P), for individuals in the state of Georgia who struggle financially to purchase medical foods and dietary supplements. The grant will be awarded each year for the next five years.

Medical foods (specially compounded formulas), along with modified low-protein foods and some dietary supplements, are the primary nutrition treatment for inherited metabolic disorders (IMD) such as phenylketonuria. Phenylketonuria affects 1 in 15,000 babies born in North America each year, according to the National Human Genome Research Institute, making it a rare genetic disorder.

The Metabolic Nutrition Program, administered through the Emory Clinic, is the only one of its kind in the state of Georgia. The program consists of a collaborative team of health professionals who provide medical nutrition management to nearly 500 individuals of all ages with IMD identified through the Newborn Screening Program of Georgia.

"This new medical foods program will help overcome the barriers to treatment, resulting in improved outcomes and less frustration both for families and providers," says Rani H. Singh, PhD, RD, LD, who will serve as principal investigator for the project.

Emory has designed the Medical Nutrition Therapy for Prevention program to assure access to medical foods for underserved patients in Georgia. The high cost of medical foods can create a significant financial burden for families – even those who are insured. This program will serve as an opportunity to assist patients of all ages who are in need, and to learn more about the underlying causes of barriers to treatment and serve as a national model.

The MNT for P program will represent a unique method for prediction, prevention and personalized nutrition care for rare disorders. Program leaders will evaluate the processes involved for access to medical foods to ensure continuous quality improvement. Through evaluation, they will strive to gain a thorough understanding of the program’s impact on families. This model is designed to ensure that medical foods are accessible to all without interruption in care while insurance and financial issues are being navigated.

"The goal of this project is to develop a database as a national model for MNT for P to evaluate access to medical foods and long-term nutrition outcomes for patients identified through newborn screening in Georgia," says Singh.

The Emory Metabolic Nutrition Program acknowledges and thanks many individuals who played an instrumental role in the implementation of the grant funding:

  • Kristen Vanags (President, Georgia PKU Connect)
  • Stephen Hunt (Georgia PKU Connect)
  • Representative Richard Smith
  • Representative Butch Parrish
  • Representative Penny Houston
  • Rani H. Singh (Director, Emory Metabolic Nutrition Program)
  • David Bayne (Director of Government Relations, Georgia Department of Public Health)
  • Emily Paynter (Newborn Screening Coordinator, Georgia Department of Public Health)

The Department of Public Health is Georgia’s lead agency in preventing disease, injury and disability; promoting health and well-being; and preparing for and responding to disasters from a health perspective.

Through the Emory Clinic, Emory’s Department of Human Genetics provides follow-up testing and management guidelines for the Newborn Screening Program of Georgia. The Metabolic Nutrition Program is administered by Rani H. Singh, PhD, RD, and is one of the nationally leading programs offering complete services to manage metabolic disorders including: inpatient and outpatient nutrition management; diet and formula instruction; computer diet analysis; medical foods programs; research and professional education.

For questions regarding the Medical Nutrition Therapy for Prevention program, please contact: Mary Lauren Salvatore, MPH, CHES, 404-778-8527 or Tammy Scott, 404-778-8497.