Experience of genetic eye diseases
Research type
Research Study
Full title
Exploring children and adult experiences of genetic eye diseases
IRAS ID
297871
Contact name
Mariya Moosajee
Contact email
Sponsor organisation
Moorfields Eye Hospital NHS Foundation Trust
Duration of Study in the UK
1 years, 5 months, 30 days
Research summary
The number of people worldwide who suffer from blindness is calculated to be in excess of 35 million people. The relative contribution of genetic defects to this cohort is not known exactly; however, it is estimated that genetic defects account for over half of the cases of blindness in children under the age of 16. Furthermore, the hereditary retinopathies are the commonest causes of registered visual handicap in developed countries.
The extent to which genetic eye diseases impacts patients’ quality of life may be variable and dependent on a broad range of clinical, social, and psychological factors. There is a need for research to greater understand the complex dynamics between genetic eye diseases and quality of life to determine why some patients are susceptible to maladaptive coping and poor psychological outcomes. This study will evaluate the prognosis of children and adults with genetic eye diseases, and characterise factors associated with negative psychological outcomes. The findings will help both ophthalmologists and allied health professionals change practice by informing families about the realities of living with genetic eye diseases and potential strategies for effective coping.
REC name
London - Fulham Research Ethics Committee
REC reference
21/PR/0693
Date of REC Opinion
6 Jul 2021
REC opinion
Further Information Favourable Opinion