Open Label Extension study (OLE) of the Modify study

  • Research type

    Research Study

  • Full title

    A multi-center, open-label, uncontrolled, single-arm, extension study to determine the long-term safety and tolerability of oral lucerastat in adult subjects with Fabry disease

  • IRAS ID

    256040

  • Contact name

    Derralynn Hughes

  • Contact email

    derralynnhughes@nhs.net

  • Sponsor organisation

    Idorsia Pharmaceuticals Ltd

  • Eudract number

    2018-002210-12

  • Clinicaltrials.gov Identifier

    NCT03737214

  • Duration of Study in the UK

    2 years, 8 months, 15 days

  • Research summary

    This study is an extension of the MODIFY study (ID-069A301). The purpose of this new study is to evaluate if the long-term intake of lucerastat is safe and well-tolerated in adults with Fabry disease.
    Lucerastat is currently not “on the market” (not available to be prescribed) in any country.
    Lucerastat has been tested in 86 healthy people (who do not have Fabry disease) and 10 patients with Fabry disease. The level of fatty substance in the blood was reduced in people with Fabry disease treated with lucerastat for 12 weeks.
    In addition, lucerastat has been tested in 14 healthy people in another study plus in approximately 72 patients with Fabry Disease in the Modify study. For both studies, the results are not yet available.

  • REC name

    London - Hampstead Research Ethics Committee

  • REC reference

    19/LO/0111

  • Date of REC Opinion

    19 Feb 2019

  • REC opinion

    Favourable Opinion