Collaborative Research and Development of a Novel, Patient-Centered Digital Platform (MyEyeSite) for Rare Inherited Retinal Disease Data: Acceptability and Feasibility Study

• Published in: JMIR formative research Vol. 6; no. 1; p. e21341
• Main Authors: Gilbert, Rose M, Sumodhee, Dayyanah, Pontikos, Nikolas, Hollyhead, Catherine, Patrick, Angus, Scarles, Samuel, Van Der Smissen, Sabrina, Young, Rodrigo M, Nettleton, Nick, Webster, Andrew R, Cammack, Jocelyn
• Format: Journal Article
• Language: English
• Published: Canada JMIR Publications 31.01.2022
• Subjects: Clinical trials; Collaboration; Eye diseases; Feasibility studies; Health services; Hospitals; Medical research; Original Paper; Patient-centered care; Patients; R&D; Rare diseases; Research & development; United Kingdom > UK; rare diseases; digital health; genetics; inherited retinal diseases (IRD); mobile phone; ophthalmology; subject access request (SAR); eye data; GDPR; MyEyeSite
• ISSN: 2561-326X; 2561-326X
• DOI: 10.2196/21341

Inherited retinal diseases (IRDs) are a leading cause of blindness in children and working age adults in the United Kingdom and other countries, with an appreciable socioeconomic impact. However, by definition, IRD data are individually rare, and as a result, this patient group has been underserved...