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Perspectives of Caregivers and Individuals Living With LCA
We invite you to share your experience with us!
The goal of this survey is to gather information from caregivers and adults (18 years of age and older) affected by LCA or RP, their experiences with the condition, and their views on potential clinical trials in the future.
The results of this survey will be summarized and shared during an upcoming Scientific Workshop with members of the research, industry, and regulatory communities which is being organized by the Foundation Fighting Blindness and Sofia Sees Hope. Although this workshop is focused on the scientific research and the audience is those working to develop treatments, it is very important that the experience of those living with the disease is also represented.
Your participation in this survey is voluntary and will not impact your ability to participate in future clinical trials (when trials become available). The survey is anonymous and the responses will not be tracked back to individuals or families.
Please complete one survey per family. If you are responding for more than one affected individual in your family, you will have the opportunity to provide detailed information for up to two affected individuals. In the event there are more than two affected, we ask that you please respond for the youngest and the oldest family members.
Many of the questions are not required, and you may leave them unanswered if you choose. However, we encourage you to be as detailed as you can be in your responses. This will help us better understand perspectives of affected individuals and their families.
If you have any questions or comments, please email tdurham@fightingblindness.org.
Your input is valuable in so many ways to the scientific community, by providing new information, insights, and continuing to motivate them as they work day-in and day-out to develop treatments for the rare retinal disease community. Thank you in advance for sharing your information and experience.