ad hoc Nutrition Guideline Workgroup
 

Co-Chairs
Fran Rohr, MS, RD Email	Mary Sowa, MS, RD Email
Core Group
Rani SIngh (Principal Investigator)	Fran Rohr (Co-PI
Amy Cunningham (PKU)	Shideh Mofidi (PKU)
Keiko Ueda (PROP)	Mary Sowa (VLCAD; Toolkit Dev.)
Sandy Van Calcar (VLCAD)	Erin Macleod
Krista Viau	Elaina Jurecki
UCD Work Group
Abby Hall	Brandi Nichols
Brandy Rawls-Castillo	Casey Campbell
Chanel Suares	Jessica Kopesky
Jessica Myers	Katie Arduini
Laura Nagy	Matthew Rasberry
Tope Pedro

View Workgroup Video

Goals and Objectives:

• Interface between GMDI and the Southeast Regional Genetics Network (SERN) to support the GMDI/SERN Nutrition Guideline Development Project's objectives:

- Create evidence and consensus-based recommendations for the nutrition management of patients with inherited metabolic disorders.
-Reduce variation in clinical practice and services across medical centers.
-Guide practice decisions that integrate medical and nutrition management

Activities:

• Work with SERN to update PKU Nutrition Guideline to include recommendations on managing patients with PKU treated with pegvaliase.
• Develop PKU Toolkit case studies on pegvaliase management

Updated April 2023