Potential Predictors of Disease Progression in aHUS Patients.

  • Research type

    Research Study

  • Full title

    Evaluation of Potential Predictors of Disease Progression in Patients with aHUS including Genetics, Biomarkers, and Treatment.

  • IRAS ID

    205613

  • Contact name

    Daniel Gale

  • Contact email

    daniel.gale@nhs.net

  • Sponsor organisation

    ALEXION PHARMACEUTICALS, INC

  • Eudract number

    2015-003135-35

  • Clinicaltrials.gov Identifier

    NCT02614898

  • Clinicaltrials.gov Identifier

    NCT02614898, ClinicalTrials.gov; 2015-003135-35, EudraCT number

  • Duration of Study in the UK

    3 years, 11 months, 8 days

  • Research summary

    This is a research study looking at patients with Atypical Haemolytic Uraemic Syndrome (aHUS) who have previously participated in an Alexion- sponsored clinical trial for uHUS. aHUS is a serious life-threatening rare disorder that is seen as an anaemia caused by red blood cells bursting in small arteries (thrombocytic microangiopathy or TMA), low platelets, and ultimately kidney failure. These abnormalities are due to the presence of clots in the small blood vessels in the kidney. aHUS can recur and is a chronic disease and therefore long- term.
    The purpose of this study is to assess TMA disease manifestations in patients with aHUS with or without ongoing eculizumab treatment in a real-world setting.
    Additional objectives of this study are to determine potential clinical predictors of disease expression and progression, including clinical characteristics and genetic profiling to determine disease activity and relationship to treatment as shown by levels of biomarkers associated with aHUS complement activation, as well as the use of associated supportive interventions.

  • REC name

    London - Hampstead Research Ethics Committee

  • REC reference

    16/LO/1436

  • Date of REC Opinion

    25 Nov 2016

  • REC opinion

    Further Information Favourable Opinion