Emily Sterling, a Masters student from the Cardiff University Centre of Medical Education, is looking for adults with aniridia to take part in a research study about their use of the internet and social media.
Emily has provided the information about the study in the text and video below. You can also watch a video of Emily talking about the study at our online conference in August, where she answered questions from our attendees.
If you are interested in taking part or have any questions after reading through this, please contact Emily at SterlingER@cardiff.ac.uk.
Participants sought for research exploring the attitudes of adults living with aniridia towards using the internet and social media in relation to their condition.
We are looking for adults (aged 18+) affected by aniridia to take part in a study which will interview participants with the aim of exploring how they use and feel about using the internet and social media to access information about aniridia and connect with others who share similar experiences.
Participating in this study will involve taking part in one approximately 60 minute interview via Zoom or a telephone call, or potentially in person (distance and availability permitting).
The interview will be structured using open-ended questions, allowing participants the opportunity to describe their own thoughts, experiences and opinions in detail about internet and social media use relating to aniridia. The study aims to improve understanding of the motivations that drive internet and social media use and identify any unmet needs, providing a basis with which to inform future service developments.
For more detail about the study, you can read a copy of the information sheet and consent form in the following formats:
If you have any further queries or would like to volunteer as a participant, please contact the principal researcher, Emily Sterling, MSc student at Cardiff University in Genetic and Genomic Counselling. This project is supervised by Professor Marion McAllister, Programme Director of the MSc in Genetic and Genomic Counselling at Cardiff University Centre for Medical Education.
Emily Sterling’s email address is SterlingER@cardiff.ac.uk
This study has been reviewed by and received a favourable ethical opinion from Cardiff University’s Research Ethics Committee.
Aniridia Network 
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