VIEW IRDs Survey
Introduction: Valuation and Interpretation of Experiences With Inherited Retinal Diseases Survey
You are invited to take part in a research survey being conducted by Dr. Chad Andrews, Senior Manager of Research and Education at Fighting Blindness Canada, in collaboration with ophthalmologists and researchers. This survey is called VIEW IRDs and it is being supported by Fighting Blindness Canada.
If you would like to increase the survey's font size on a Windows PC, hold the CNTRL button and click the + (plus) key; each click will increase the size further. The - (minus) key can be used in the same way to shrink text.
If you are using a Mac PC, hold the CMD button and click the + (plus) key; again, using the - (minus) key will decrease the size.
These instructions are specific to Google Chrome browsers and may not work in all cases. For other browsers, please see more detailed instructions at the following link: https://www.computerhope.com/issues/ch000779.htm
WHY IS THIS SURVEY BEING CONDUCTED?
The purpose of the survey is to find out what it is like to live with inherited retinal diseases (IRDs), what types of barriers patients face in accessing effective treatment, and what kind of treatments and resources would be helpful to better support patients. About 500 people will complete the survey.
WHAT WILL HAPPEN IF I TAKE PART IN THE SURVEY?
If you decide to take part, you can fill out the survey electronically or we can mail the survey to you if you prefer. It will take you approximately 30 minutes to complete the survey. You will be providing information on your experiences, or your child's experiences, with an IRD and especially what it's like to live with the condition. If you are the parent or legal guardian of a child with IRD, when "you" appears in this survey, it may refer to you or your child, as appropriate. The survey consists of questions about how IRD affects your daily life, what treatments you use, and where you get information about IRD. This information may help researchers and decision-makers understand the unmet needs of individuals living with IRD.
You may have a caregiver complete the survey on your behalf. However, please read this page first so you can understand the survey and agree to have a caregiver participate.
WHAT ARE THE POSSIBLE RISKS AND DISCOMFORTS?
There are no physical risks associated with completing the survey. However, the survey questions ask you to think about your health journey which may bring up some uncomfortable feelings for you.
WHAT ARE THE POSSIBLE BENEFITS FOR ME AND/OR SOCIETY?
There are no medical benefits to you for taking part in the survey. However, it is expected that the research will contribute to new knowledge about the needs of people with IRDs, and the need for access to better treatments.
DO I HAVE TO PARTICIPATE IN THE SURVEY?
Your participation is voluntary.
WHAT INFORMATION WILL BE KEPT PRIVATE?
If you indicate on the survey that you would be willing to be contacted for a telephone interview, we will collect your email address. Your identity will be kept confidential at all times, except where disclosure is required by law. Representatives of the research ethics board - Advarra IRB (an independent ethics committee that reviewed the study to help protect the rights of study participants) - may have access to the information collected.