Rare Ophthalmic Diseases and the Ability to Collect, Manage and Share Patient Health Data – MyEyeSite

Rare Ophthalmic Diseases and the Ability to Collect, Manage and Share Patient Health Data – MyEyeSite

Dr. Andrew Webster, Lead of Genetics Service at Moorfields Eye Hospital and Chair of Molecular Ophthalmology at University College London, and Nick Nettleton, Founder and Chief Executive Officer at Loft Digital, provide a detailed overview of how MyEyeSite is changing the information landscape for rare ophthalmic diseases. The guests highlight how the MyEyeSite platform is bridging information gaps and enabling for better patient care while simultaneously creating a vast repository of information for researchers of rare ophthalmic diseases.

About the guests:

MyEyeSite is a patient-led repository of rare eye disease data, developed to accelerate research, and support patients and clinicians. Rare eye disease patients can create and manage their own medical record securely in the cloud and can choose to share their data with their clinician. MyEyeSite helps to break down institutional and even international barriers by empowering patients and allowing them to contribute their data for research.

Andrew Webster
Lead Genetics Service Moorfields Eye Hospital
Chair Molecular Ophthalmology UCL

Andrew Webster is Professor of Molecular Ophthalmology at University College London and a Consultant Ophthalmologist at Moorfields Eye Hospital, London UK. He leads the Genetics Service at Moorfields, the largest specialist service in the country, which delivers genetic counselling, diagnosis and management for those with paediatric, retinal, optic nerve, cataract and ocular maldevelopment inherited conditions. His research team has discovered genetic mechanisms that underlie retinal dystrophies. He leads the Hearing and Sight Domain of the Genomics England Clinical Interpretation Partnership, a British National study to sequence over 100,000 genomes in those with rare disease and cancer. He trained in Ophthalmology and Genetics in Cambridge, Iowa (USA) and London.
Since 2018 he has been working with collaborators to develop the application MyEyeSite www.myeyesite.health a patient-centric application to aggregate and share clinical data in rare eye disease, which is the subject of this podcast.

Nick Nettleton
Founder and Chief Executive Officer at Loft Digital

Nick Nettleton is founder and CEO of Loft Digital. He has been designing and developing usable, data-rich digital applications since the early days of the web. In 2007, he founded Loft, a London-based technology consultancy that helps clients solve important business, organisational and human challenges by building the right digital tools. Nick has helped organisations in several key industries implement leading technology platforms, taking them from initial concept to global scale – including the UK Sunday Times Fast Track 100 winner, Cyclescheme. In recent years, Nick has focused on applying his expertise in the health sector – in particular, to the MyEyeSite application – to empower patients, accelerate research and support health services.

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