Stargardt’s Community Register
I’m delighted and excited that Stargardt's Connected are launching their community register! Taking part in the register will help with connecting our community, establishing local networks and support groups for people with Stargardt’s. The register will provide valuable information on patients with Stargardt's disease that may support multiple different avenues of research and investigation, including gaining insights into the underlying genetic basis, the variability between different forms of Stargardt's disease, support development of treatments, and patient experiences associated with Stargardt's disease. Investigators and Sponsors will be able to approach Stargardt's Connected to discuss studies and trials they are considering, which may be shared as appropriate with patients on the register who have expressed interest in being contacted.
The larger and more complete the register, the more valuable and relevant it will be.
Professor Michel Michaelides
Consultant Ophthalmologist at Moorfields Eye Hospital and Medical Advisor to Stargardt’s Connected
By taking part in the register, you can help us learn more about our Stargardt’s community. We can:
- Find out who we are and where we are to help us support one another
- Understand how Stargardt’s affects different people and their families
- Create opportunities to keep people informed about progress in research and future opportunities to take part in Stargardt’s studies
- Share anonymised data that will help researchers better understand the impact of Stargardt’s on people’s lives.
If you would like to know more about the form please watch the video below.
Accessibility Guidance
Please use the tools provided via the accessibility icon in the top right corner of the page.
If you need further help to make the form accessible, we recommend the following:
- You can have the text on the website read out loud to you by your computer. Simply select the text you want to hear, and then right click to get your browser window menu. Depending on what browser and what version you have, you will then need to click on the menu item that says 'Speech' or 'Start Speaking' or 'Read Aloud' etc.
- You can download a screen reader such as the Dolphin Guide Connect here.
- You can zoom in and out of the page by using Command and '+' or '-' (if you are on a Mac, or by using Ctrl and '+' or '-' (if you are on a PC).
- If you are using Windows 10 you can use the Windows 10 Magnifier. You can watch a demo on how to do that here.
If you experience any difficulties with the registration process please contact us via the Contact page or directly via [email protected].