Key Project Personnel Nutrition Guidelines Project Principal Investigators:
- Rani Singh, PhD, RD; Emory University, Dept. of Human Genetics
- Fran Rohr MS, RD; Met Ed Co
Nutrition Guidelines Project Workgroup Chairs
- MSUD: Dianne Frazier, PhD, RD
- PKU: Amy Cunningham, MS, RD and Shideh Mofidi, MS, RD
- Organic Acidopathies: Keiko Ueda, MS, RD and Elaina Jurecki, MS, RD
- Fatty Acid Oxidation Disorders: Fran Rohr, MS, RD and Sandy Van Calcar, PhD, RD
- Urea Cycle Disorders: Krista Viau, PhD, RD and Erin MacLeod, PhD, RD
UCD Workgroup Members:
- Katie Arduini, RD, LDN, CLS; Lurie Children's Hospital
- Jennifer Beazer, MPH, RDN, LD; Metabolic Dietitian; flok
- Casey Campbell, RD; Metabolic Dietitian; the Mt Sinai Hospital
- Abby Hall, RD; Metabolic Research Dietitian; Indiana University School of Medicine
- Elaina Jurecki, MS, RD, FAND; Director of Research Development; National PKU Alliance Organization
- Jessica Kopesky, MS, RD, CD, CLC; Senior Clinical Dietitian; Children's Wisconsin
- Shana Maloney, MS, RD; Regional Metabolic Program Coordinator; Kaiser Permanente Northern CA
- Anna McGuinness, MS, RD, LDN; Metabolic Dietitian and Newborn Screening Coordinator; University of Florida
- Laura Nagy, MSc, RD; Metabolic Dietitian; The Hospital for Sick Children
- Brandi Nichols, RD, CSP, LD; Lead Metabolic Dietitian; Arkansas Children's Hospital
- Temitope (Tope) Pedro, MPH, RD, CSP; Metabolic and NICU Dietitian; Stanford Medicine, Children's Health
- Brandy Rawls-Castillo, MS, RD, LD; Clinical Program Coordinator; Texas Children's Hospital
- Meriah Shoen, PhD, RDN; Nutrition Scientist; Aeons and PUER Health
- Aly Smith, MS, RD, LDN, CNSC; Metabolic Dietitian; UMPC Children's Hospital
- Mary Sowa, MS; Retired Metabolic Dietitian
- Chanel Suares, RD; Senior Metabolic Dietitian; UCLA
- Amie Thompson, RD, LD; Associate Director, Medical Affairs; Ultragenyx
Delphi 1 Participants
- 11 Dietitians, 11 Physicians, and 3 Nurse Practitioners participated in the first UCD Delphi survey.
Nominal Group Process Experts:
- Nicholas Ahmew, MD; Children's National Health System
- Ashley Andrews, DNP, CPNP; University of Utah
- Annette Feigenbaum, MD; UCSD
- Ilona Ginevic, MS, RD; The Mt Sinai Hospital
- Leslie Martell, MS, RD, LDN; Boston Children's Hospital
- Shideh Modifi, MS, RD; Maria Fareri Childrens Hospital at Westchester Medical Center
- Tresa Warner, MBA; National Urea Cycle Disorder Foundation
- Jodi Wright, RD, CNSC; Lucile Packard Children's Hospital Stanford
Delphi 2 Participants
- 15 Dietitians, 8 Physicians, and 2 Nurse Practitioners participated in the second UCD Delphi survey.
External Review Participants
- 7 individuals participated in the external review of the UCD Nutrition Management Guidelines. They included relevant stakeholders such as dietitians, physicians, and nurse practitioners who provided an assessment of the Guidelines for Nutrition Management of individuals with UCDs
Experts involved at different steps of the guidelines development process included clinicians (metabolic dietitians, physicians and nurse practitioners), researchers, and a consumer representative.
Other expert participants included:
- Project Consultant: Patricia Splett, PhD, RD; Splett & Associates
- Application Developer: Adria Stembridge; Emory University, Dept. of Human Genetics
- Project Manager: Aileen Kenneson-Adams, PhD, MS; Emory University, Dept. of Human Genetics
- Lead Evidence Analysts: Aileen Kenneson-Adams, PhD, MS; Emory University, Dept. of Human Genetics
- Reference Librarian: Jeremy Kupsco, PhD; Emory University, Health Sciences Center Library
Nutrition Management Guidelines Project Core Group:
- Principal Investigators: Rani Singh and Fran Rohr
- Project Manager: Aileen Kenneson-Adams
- Application Developer: Adria Stembridge
- Workgroup Chairs: Krista Viau and Erin MacLeod
- GMDI Representative: Krista Viau
- Project Consultant: Patricia Splett
All project personnel and core group members submitted a conflict of interest statement approved by Emory University's Institutional Review Board.
Potential Conflict of Interest Disclosure
- Fran Rohr, MS, RD - is a Managing Partner of Met Ed, and has received educational grants from Amgen and Nutricia to support Metabolic University.
- Rani H. Singh, PhD, RD - served on a scientific advisory board for Amgen in 2025, and received funds from Immedica in 2025 to serve as a scientific meeting speaker.
- Krista Viau, PhD, RD - has no financial or other conflict of interest disclosures.
- Erin MacLoed, PhD, RD - participated in Advisory Boards for Amgen, and Cycle Pharma, and is a Board Member of flok
- Patricia Splett, PhD, RD - has no financial or other conflict of interest disclosures