11 November, 2023
The Victorian Evolution of Inherited Retinal Diseases Natural History Registry (VENTURE) Study is a collaboration between the Centre for Eye Research Australia and the University of Melbourne led by Associate Professor Lauren Ayton and Dr Tom Edwards.
The study aims to collect retrospective and prospective data from people with inherited retinal disease (IRD) and female carriers of X-linked IRD.
The purpose of the registry is to enable:
- recruitment for investigator-initiated research studies, including longitudinal natural history studies and genotype/phenotype studies, and
- to identify people who may be eligible for upcoming industry-sponsored clinical trials.
What is involved in participating in the Study?
- Participants can choose to be remotely registered only (where we complete registration and surveys over the phone, and collect retrospective information from their healthcare providers) or attend a baseline research visit.
- At the research visit, patients will undergo a comprehensive eye examination involving vision assessments, visual fields, and retinal imaging. Vision and lifestyle questionnaires will be administered to capture opinions, emotions, and daily living of people with, or female carriers of, IRD.
- Participants can choose to return for longitudinal visits and other research studies, with no obligation to do so at any time.
- With their opt-in consent, participants will be registered on our database to be contacted should any relevant clinical trials become available.