IRD patients’ social lives and opinions of new therapies (version 1)
Research type
Research Study
Full title
A research study exploring the experiences of the social life, and attitudes towards new therapies, in patients with inherited retinal dystrophies (IRDs)
IRAS ID
209848
Contact name
Marion McAllister
Contact email
Clinicaltrials.gov Identifier
N/A, N/A
Duration of Study in the UK
1 years, 0 months, 30 days
Research summary
This research study aims to explore two closely related topics relevant to those living with a diagnosis of inherited eye disease and is entitled: A research study exploring Retinitis pigmentosa (RP) patients’ experiences of the social life, and attitudes towards new therapies in patients with any form of inherited eye disease.
We know that visual impairment can negatively impact on the mental health and emotional well-being of individuals as a result of difficulties relating to employment, personal identity, and forming and maintaining relationships. Inherited eye diseases are currently incurable yet thanks to recent improvements in our understanding of the biology of these conditions, research studies and clinical trials are now underway looking at the use of gene therapy, stem cell therapy and prosthetic devices as treatments to prevent and restore visual impairment.
This study will be qualitative, using semi-structured interviews to gain insight into the complex issues facing those with inherited forms of visual disability relating to these areas specifically. This has never been done before and it is hoped that the study findings will contribute to the improvement of services for this group of people.
Adults with a diagnosis of inherited eye disease will be identified and recruited through the Genetic Eye Clinic at The University Hospital of Wales as guided by clinical supervisor, Prof Marcela Votruba. Participants will be expected to take part in an interview covering one of the study topics. Due to the specific nature of the interview regarding the social life these interviews will only include RP patients yet due to the wide coverage of therapies under development for IRDs interviews on this topic will include participants with RP and other IRDs. These interviews will be transcribed and analysed using qualitative thematic analysis and written up in the form of two MSc dissertation research projects.REC name
Wales REC 3
REC reference
16/WA/0314
Date of REC Opinion
14 Oct 2016
REC opinion
Favourable Opinion