Published on in Vol 6, No 1 (2022): January

Preprints (earlier versions) of this paper are available at https://preprints.jmir.org/preprint/21341, first published .
Collaborative Research and Development of a Novel, Patient-Centered Digital Platform (MyEyeSite) for Rare Inherited Retinal Disease Data: Acceptability and Feasibility Study

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

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

Rose M Gilbert   1, 2, 3 , PhD ;   Dayyanah Sumodhee   4 , PhD ;   Nikolas Pontikos   2, 5 , PhD ;   Catherine Hollyhead   6 , EngD ;   Angus Patrick   6 ;   Samuel Scarles   7 , BSc ;   Sabrina Van Der Smissen   7 ;   Rodrigo M Young   5 , PhD ;   Nick Nettleton   7 , BA ;   Andrew R Webster   1, 2, 5 , MD ;   Jocelyn Cammack   1, 5 , PhD

1 NIHR Moorfields Biomedical Research Centre, Moorfields Eye Hospital NHS Foundation Trust and UCL Institute of Ophthalmology, London, United Kingdom

2 Medical Retina Service (City Road), Moorfields Eye Hospital NHS Foundation Trust, London, United Kingdom

3 Addenbrookes Hospital, Cambridge University Hospitals NHS Foundation Trust, Cambridge, United Kingdom

4 Florence Nightingale Faculty of Nursing, Midwifery and Palliative Care, Kings College London, London, United Kingdom

5 Institute of Ophthalmology, UCL, London, United Kingdom

6 MyEyeSite IRD Patient Advisory Group, London, United Kingdom

7 Loft Digital Limited, London, United Kingdom

Corresponding Author:

  • Rose M Gilbert, PhD
  • NIHR Moorfields Biomedical Research Centre
  • Moorfields Eye Hospital NHS Foundation Trust and UCL Institute of Ophthalmology
  • 2/12 Wolfson Building
  • 11-43 Bath Street
  • London, EC1V 9EL
  • United Kingdom
  • Phone: 44 020 7608 6800
  • Email: rose.gilbert@gmail.com