Longitudinal evaluation of disease progression in MacTel Version1.2

  • Research type

    Research Study

  • Full title

    A NATURAL HISTORY OBSERVATION AND REGISTRY STUDY OF MACULAR TELANGIECTASIA TYPE 2 - THE MACTEL STUDY SUB-STUDY #2 – LONGITUDINAL STUDY FOR COLLECTION OF ADDITIONAL DATA AND BIOLOGIC SPECIMENS

  • IRAS ID

    359454

  • Contact name

    Catherine Egan

  • Contact email

    cathy.egan@nhs.net

  • Sponsor organisation

    Lowy Medical Research Institute

  • Duration of Study in the UK

    1 years, 0 months, 1 days

  • Research summary

    Macular telangiectasia type 2 (MacTel) is a slowly progressive,
    neurodegenerative disease of the central retina with a particular retinal and
    metabolic phenotype. MacTel is considered a complex disease with a
    heterogeneous genetic background, and with multiple biological mechanisms
    involved.
    Though disease progression in MacTel is overall slow, it may differ significantly between individuals. Different markers of disease progression, including morphological and functional alterations, have previously been proposed and evaluated. Intermediate size of ellipsoid zone loss at baseline, outer retinal hyper-reflective changes, reduced ellipsoid zone reflectivity, loss of the interdigitation zone on optical coherence tomography as well as extended depletion of macular pigment have been shown to be associated with faster progression. Whether other imaging markers, metabolic changes,
    genetic variants, systemic diseases, concomitant medication or dietary supplements may impact retinal disease progression, has not yet been systematically evaluated.
    We hypothesize that
    (I) Disease progression in MacTel is determined by multiple factors.
    To assess determinants of retinal disease progression and to evaluate novel biomarkers and clinical endpoints we will use a multi-omics approach and evaluate retinal imaging, visual
    function, participant-reported outcome measures, demographics, medical history, medication and supplement intake, genomics, metabolomics, transcriptomics and proteomics.
    (II) Using this approach, we can then identify novel candidate endpoints that will be chosen and assessed for reliability, responsiveness to change over time, structure-function correlation, and participant relevance.

  • REC name

    London - Dulwich Research Ethics Committee

  • REC reference

    25/LO/0667

  • Date of REC Opinion

    18 Sep 2025

  • REC opinion

    Unfavourable Opinion