Retrospective Study of Trientine in Wilson's Disease Subjects

  • Research type

    Research Study

  • Full title

    Multicentre, Retrospective Study to Assess Long-Term Outcomes of Chelator-Based Treatment With Trientine in Wilson Disease Patients Withdrawn from Therapy With d-Penicillamine

  • IRAS ID

    148984

  • Contact name

    Anil Dhawan

  • Contact email

    anil.dhawan@nhs.net

  • Sponsor organisation

    Univar B.V.

  • Clinicaltrials.gov Identifier

    EUDRACT number:, 2013-003564-31

  • Research summary

    This is a retrospective, multicentre study of the efficacy, safety and tolerance of Trientine in Wilson’s disease patients who are withdrawn from therapy with d-Penicillamine.
    This study will investigate the safety, efficacy and tolerance of trientine retrospectively in patients who have received treatment with trientine for at least 6 months after withdrawal of treatment with d-Penicillamine. Existing data from patient's files will be collected and no clinical procedures and/or examinations are specifically planned as part of this study. We will examine the influence of treatment with Trientine on the copper deposits and progress of neurological and liver disease. In addition, all illnesses that occurred during the treatment with Trientine will be evaluated. We have planned to include 90 patients aged 1 year to 90 years in this study in all participanting countries.
    In the UK, Trientine is approved for the treatment of Wilson's disease in patients who do not tolerate d-Penicillamine. However, Trientine is made available to patients in the rest of the European Union only on a named prescription basis. To enable easy access of Trientine to patients in the European Union it needs to obtain a marketing authorisation from the European Medicines Agency (EMA) in those countries. This current study aims to collect data about the efficacy and safety of Trientine to support its approval across the European Union.

  • REC name

    West of Scotland REC 5

  • REC reference

    14/WS/1008

  • Date of REC Opinion

    17 Jun 2014

  • REC opinion

    Further Information Favourable Opinion