PKU GOLIKE PLUS 3-16 - MARKET RESEARCH STUDY - Version 1

  • Research type

    Research Study

  • Full title

    PKU GOLIKE PLUS 3-16 - Acceptability and tolerance market research study

  • IRAS ID

    256519

  • Contact name

    Anita MacDonald

  • Contact email

    anita.macdonald@nhs.net

  • Sponsor organisation

    APR Applied Pharma Research SA

  • ISRCTN Number

    ISRCTN12387189

  • Duration of Study in the UK

    0 years, 4 months, 29 days

  • Research summary

    The principle treatment for children with phenylketonuria (PKU) is a low protein diet. Part of this treatment requires the administration of a protein substitute. Several brands of protein substitutes are already available in the UK in various presentations. However, compliance with taking protein substitutes continues to be a challenge. As a low protein diet is recommended for life, long-term compliance is a growing concern. As a result, improving the choice in terms of product type may aid compliance.

    PKU GOLIKE PLUS 3-16 (APR Applied Pharma Research S.A.) is a protein substitute designed for children with PKU, aged 3-16 years.

    This prospective, observational market research study aims at evaluating the acceptability and tolerability of this new protein substitute in 8-10 children with PKU, aged 3-16 years.
    Subjects who are currently taking a protein substitute for PKU will be recruited for a 7-day trial of the new protein substitute. The treatment with the new protein substitute will last for 7 days.

    During the 7-day trial, caregivers will be asked to complete a daily questionnaire recording information on:
    • Usage and compliance;
    • Ease of use and any issues with administration;
    • Any gastro-intestinal side-effects.

    A questionnaire will also be completed at the beginning and at the end of the study and it will consider perceptions about taste, appearance, smell, presentation and packaging of the new product; ease of administration; how it is taken; and any other problems or symptoms.

    Finally, subjects will be asked to undergo routine biochemical testing, in fasting conditions, at the beginning and at the end of the trial, for measuring blood phenylalanine levels.

    The outcome of this assessment will be used in a submission to regulatory authorities to get the study product reimbursable on prescription in the UK.

  • REC name

    West Midlands - Solihull Research Ethics Committee

  • REC reference

    19/WM/0151

  • Date of REC Opinion

    25 Jun 2019

  • REC opinion

    Further Information Favourable Opinion