Transitioning of Protein Substitutes in PKU
Research type
Research Study
Full title
Transitioning of Protein Substitutes for Patients with Phenylketonuria
IRAS ID
310552
Contact name
Anita MacDonald
Contact email
Duration of Study in the UK
1 years, 4 months, 30 days
Research summary
Protein substitutes are an integral part of dietary treatment in phenylketonuria. There are different types of age specific protein substitutes, designed to meet the nutritional and developmental needs of children with PKU, including infant, weaning, child and adult formulae. Transitioning protein substitutes at the appropriate developmental age is essential to help with long-term acceptance, ease of administration and protein substitute independence. Parents face several barriers during the protein substitute transition process, and they need a persistent and resolute approach with consistent support by family members, the PKU specialist team, and school/nursery teachers. Thus, there is an important need to develop guidance to assist parents/caregivers, health professionals, and school and nursery teachers during the transitioning of protein substitutes in young children. We propose a longitudinal prospective study with children with PKU to develop a ‘protein substitute transition protocol’ with additional tools to assist health professionals, teachers, and parents/caregivers transitioning young children from a semi-solid second stage to an advancing age-appropriate protein substitute.
REC name
London - Riverside Research Ethics Committee
REC reference
22/PR/0428
Date of REC Opinion
12 May 2022
REC opinion
Further Information Favourable Opinion