Journal article
Survey of perspectives of people with inherited retinal diseases on ocular gene therapy in Australia
Heather G Mack, Alexis Ceecee Britten-Jones, Myra B McGuinness, Fred K Chen, John R Grigg, Robyn V Jamieson, Thomas L Edwards, John De Roach, Fleur O'Hare, Keith R Martin, Lauren N Ayton
GENE THERAPY | SPRINGERNATURE | Published : 2023
Abstract
Many gene therapies are in development for treating people with inherited retinal diseases (IRD). We hypothesized that potential recipients of gene therapy would have knowledge gaps regarding treatment. We aimed to assess knowledge, attitudes, and perceptions of genetic therapies among potential recipients with IRD, using a novel instrument we designed (Attitudes to Gene Therapy-Eye (AGT-Eye)) and their associations with demographic data, self-reported visual status, and tools assessing quality of life and attitudes toward clinical trials using a community-based cross-sectional survey of Australian adults with IRD. AGT-Eye, overall quality of life EQ-5D-5L, National Eye Institute Visual Func..
View full abstractGrants
Awarded by Australian National Health and Medical Research Council Centre of Research Excellence grant
Funding Acknowledgements
This work was supported by a Retina Australia medical research grant (to HGM, FKC, JRG and LNA) for 2021, grant not numbered. Researchers were also supported by an Australian National Health and Medical Research Council Centre of Research Excellence grant (GNT1116360: FKC, RVJ and JRG), Fellowships (MRF1142962: FKC and MRF1151055 and GNT1195713: LNA), and Ideas Grant (FKC GNT1188694). Centre for Eye Research Australia receives support from the Victorian State Government through its Operational Infrastructure Support Program. Open Access funding enabled and organized by CAUL and its Member Institutions.