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Analysis of patients with rare retinal diseases

  • Research type

    Research Database

  • IRAS ID

    300637

  • Contact name

    Peter Charbel Issa

  • Contact email

    peter.issa@ouh.nhs.uk

  • Research summary

    Analysis of patients with rare retinal diseases

  • REC name

    Yorkshire & The Humber - Leeds East Research Ethics Committee

  • REC reference

    22/YH/0156

  • Date of REC Opinion

    10 Aug 2022

  • REC opinion

    Unfavourable Opinion

  • Data collection arrangements

    The clinical presentation of rare retinal diseases is often not described in the literature in detail using state of art phenotyping, although this is performed on daily basis in retinal clinics. Moreover, today’s routine imaging modalities, genotyping, and other biomarker studies, occasionally reveal previously not identified phenotypic characteristics. However, such insights are often not reported, although improved knowledge would result in better diagnostic and prognostic patient care and would enable improved patient counselling.

    Hence, the aim of this project is to establish a database to be able to provide detailed clinical information on rare eye diseases – single cases or where possible case series. This will be accomplished by retrospectively analysing clinical data of similar cases even if they were seen in clinic years apart.

  • Research programme

    Research programmes investigating the natural history, variability and diagnostic approaches of rare eye diseases will be supported by the database. Applications can be submitted to the database panel who will assess each application based on its merit and the availability of the requested data in the database. Patients with rare eye diseases will also benefit from the database as we expect it will give a better insight into their disease variability, hereditability and potential complications or outcomes.

  • Research database title

    Analysis of patients with rare retinal diseases

  • Establishment organisation

    Oxford Eye Hospital

  • Establishment organisation address

    John Radcliffe Hospital, Headley Way

    Headington

    Oxford

    OX3 9DU

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