Long Term Follow Up study of Gene Therapy Trial for Patients with RPGR

  • Research type

    Research Study

  • Full title

    Phase 3 Follow-up Study of AAV5-hRKp.RPGR for the Treatment of X-linked Retinitis Pigmentosa Associated with Variants in the RPGR gene - Protocol MGT-RPGR-022

  • IRAS ID

    287029

  • Contact name

    James Bainbridge

  • Contact email

    james.bainbridge1@nhs.net

  • Sponsor organisation

    MeiraGTx UK II Limited

  • Eudract number

    2020-002255-37

  • ISRCTN Number

    ISRCTN00000000

  • Clinicaltrials.gov Identifier

    NCT00000000

  • Clinicaltrials.gov Identifier

    EDMS-RIM-34175, 1.0, EDMS number

  • Duration of Study in the UK

    5 years, 9 months, 0 days

  • Research summary

    This MGT‐RPGR‐022 study is a follow‐up study to MGT‐RPGR‐021.
    After participants have completed the first study (MGT‐RPGR‐021), they will be invited to continue to the second study (MGT‐RPGR‐022). Participants who did not receive the intervention in MGT‐RPGR‐021 will receive the intervention in MGT‐RPGR‐022, in both eyes.
    The purpose of this study is to see if the investigational gene therapy is safe and useful in patients not treated in the MGT‐RPGR‐021 study
    and to extend follow‐up for patients that received intervention in the MGT‐RPGR‐021 or MGTRPGR‐022 studies.
    The total duration of this study will be for a period of 4 to 5 years. The length of participation will depend on participants' intervention assignment from MGT‐RPGR‐021. Participants will need to
    review the information for both studies and decide whether they agree to participate.
    Participants treated in MGT‐RPGR‐021 will be followed for 4 years and participants not treated in MGT‐RPGR‐021 will receive treatment in MGTRPGR‐022 according to the same schedule as participants treated in 021 and then followed for an additional 4 years.
    During both studies, the sponsor may learn new information about the investigational gene therapy, the risks, and additional information.
    Participants' doctor/staff will tell participants in a timely manner if there is any new information that might make participants change their mind about being in the studies.

  • REC name

    London - West London & GTAC Research Ethics Committee

  • REC reference

    21/LO/0046

  • Date of REC Opinion

    18 May 2021

  • REC opinion

    Further Information Favourable Opinion