74765288CEY0004 protocol 1

  • Research type

    Research Study

  • Full title

    A Prospective Non-interventional Study to Support the Reproducibility and Convergent Validity of Novel Clinical Outcome Assessments Developed for Studies in Adults and Children with Achromatopsia Associated With Variants in CNGA3 and CNGB3 Genes

  • IRAS ID

    324084

  • Contact name

    Angelique Quistin

  • Contact email

    aquistin@its.jnj.com

  • Sponsor organisation

    Janssen Cilag International NV

  • Duration of Study in the UK

    1 years, 6 months, 6 days

  • Research summary

    The purpose of this study is to determine whether the instruments and questionnaires being tested in the study are able to measure vision reliably, and if they may be used to measure if a treatment works in future studies in participants with Achromatopsia associated with genetically confirmed CNGA3 or CNGB3 variants.
    About 75 participants will take part in this study in the United Kingdom at 1 site. Participants in the study will be in it for about 12-16 months and will visit the site approximately 4 times.

    The overall duration of the enrolment period will be up to 6 months. The study will be considered completed after the last participant enrolled completes all study visits expected 12 months after the last patient is enroled. The study doctor or qualified designee will perform a medical record review to screen the participant’s medical history for a diagnosis consistent with Achromatopsia. The participants who have not been previously genetically tested for this condition will undergo genetic testing through either a saliva or blood sample.
    Participant baseline information, genetic testing results, and results of clinical assessments will be captured in the source documentation and electronic case report form.

  • REC name

    London - Fulham Research Ethics Committee

  • REC reference

    23/PR/0028

  • Date of REC Opinion

    12 Apr 2023

  • REC opinion

    Further Information Favourable Opinion