Request to complete a survey on exploring the experiences of female carriers of X-linked IRDs.
Dear all,
We have received a request from our academic collaborators in Australia (Center for Eye Research Australia, University of Melbourne) for the possibility of circulating this survey within our network. The survey aims to explore the experiences of female carriers of X-linked IRDs (i.e. mothers, sisters or daughters of affected males with X-linked IRDs).
Please see the blurb below and the corresponding link to the survey.
This research study is investigating the experiences of female carriers of X-linked Inherited Retinal Disease. Female carriers are mothers, sisters, and/or daughters of people with an inherited retinal disease, such as retinitis pigmentosa and choroideremia. Female carriers may or may not exhibit symptoms relating to the respective condition, however, there is a risk they may pass the disease-causing gene to their children. There are two questionnaires for this research study: the first survey aims to gather more information about your opinions and knowledge relating to being a female carrier of an X-linked Inherited Retinal Disease; the purpose of the second questionnaire is to understand any effects being a carrier has on your vision and overall lifestyle.
You can complete the survey online via this link: https://tinyurl.com/carriervisionandlifestyle
An excellent video where one of the investigators explains her project can be accessed ![Sena short video on PhD project_June2022.mp4 icon]() here.
Thank you very much.
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