Janssen EYE-RD
Research type
Research Study
Full title
Global Patient Registry of Inherited Retinal Diseases
IRAS ID
327708
Contact name
Andrew Lotery
Contact email
Sponsor organisation
Janssen
Duration of Study in the UK
7 years, 10 months, 18 days
Research summary
There is an unmet need for IRD patients to receive a timely diagnosis, and limited options are available in clinical management following diagnosis. Data are also limited on the patient and caregiver experience and burden of IRDs, including physical, social, emotional, and financial impacts, as well as the patient perspective on the impact of disease. The data collected as part of this registry will provide a long-term perspective on the patient journey and disease progression in a broad patient population. The aim of this prospective, longitudinal, global registry of patients genetically diagnosed with IRDs (XLRP and ACHM) is to collect timely and relevant data that will support the evolving research needs of the IRD community, in order to provide insights that can be used to improve patient management, and to inform development of future treatments. It will describe and quantify the personal and societal impacts of IRDs; and contribute to understanding the IRD patient population in terms of their medical history, clinical characteristics, patient management, disease stages, therapies used, and outcomes in real-world clinical practice.
REC name
Yorkshire & The Humber - Leeds East Research Ethics Committee
REC reference
23/YH/0163
Date of REC Opinion
25 Sep 2023
REC opinion
Further Information Favourable Opinion