Phenylalanine supplementation in Tyrosinemia type 1

  • Research type

    Research Study

  • Full title

    The effect of phenylalanine supplementation on metabolic control in Tyrosinemia type 1 patients

  • IRAS ID

    216139

  • Contact name

    Saikat Santra

  • Contact email

    saikat.santra@bch.nhs.uk

  • Sponsor organisation

    University Medical Center Groningen

  • Duration of Study in the UK

    1 years, 0 months, 0 days

  • Research summary

    Hereditary Tyrosinemia Type 1 (HT1) patients usually present with liver dysfunction and/or renal tubular dysfunction with rickets early in life. After the introduction of 2-(2-nitro-4-trifluoro-methylbenzoyl)-1,3-cyclohexanedione (NTBC), problems resolved and life expectancy greatly increased. However, due to NTBC, which blocks the conversion of tyrosine at an earlier step, tyrosine concentrations increase, and therefore dietary restrictment of tyrosine and its precursor phenylalanine is needed again. Recently, some research articles report about low phenylalanine concentrations in HT1 and a possible correlation between these low phenylalanine concentrations and clinical problems such as eczema and an impaired cognitive development. This makes phenylalanine supplementation necessary despite possible conversion to tyrosine and the resulting increase in tyrosine.
    Previous research has also shown a consistent diurnal variation of phenylalanine, with extremely low phenylalanine concentrations early in the afternoon. This consistent diurnal variation and increase in tyrosine concentrations suggest that studies examining the optimal dose of phenylalanine supplementation (a specific food for medical purposes) is necessary.

  • REC name

    West Midlands - South Birmingham Research Ethics Committee

  • REC reference

    17/WM/0114

  • Date of REC Opinion

    3 Jul 2017

  • REC opinion

    Further Information Favourable Opinion