Core Group

Rani SIngh (Principal Investigator)

Amy Cunningham (PKU)

Keiko Ueda (PROP)

Sandy Van Calcar (VLCAD)

Krista Viau (UCD)

Fran Rohr (Co-PI)

Shideh Mofidi (PKU)

Mary Sowa (VLCAD; Toolkit Dev.)

Erin Macleod (UCD)

Elaina Jurecki (PROP)

UCD Workgroup

Abby Hall
Brandy Rawls-Castillo
Chanel Suares
Jessica Myers
Laura Nagy
Tope Pedro
Brandi Nichols
Casey Campbell
Jessica Kopesky
Katie Arduini
Matthew Rasberry

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 2024