ad hoc Nutrition Guideline Workgroup
Co-Chairs
|
 |
 |
Fran Rohr, MS, RD
Email |
Mary Sowa, MS, RD
Email
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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 |
|
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