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.
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If you need further help to make the form accessible, we recommend the following:
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