Data Use Application 009
Lead applicant organisation name
Name of the legal entity that signs the contract to access the data.
Roche Products Ltd.
Project title
The title of the project/research study request that the applicant is investigating through the use of health data.
Predicting disease progression and treatment response in patients with diabetic retinopathy and diabetic macular oedema.
Lay summary
A concise and clear description of the project. This should outline the problem, objective and the expected outcomes in language that is understandable to the general public.
Diabetes is a global problem and by 2045 it is estimated that it will affect more than 600 million people worldwide. The UK and the world face an epidemic of vision loss from diabetic eye disease and in many countries diabetic retinopathy (DR) and diabetic macular oedema (DMO) are the most common cause of blindness in working-age populations. The UK was the first country to establish a national screening programme for DR, leading to early detection of sight-threatening disease. However, there is significant over-referral to hospital eye services. More importantly, there is still much to be learned about the risks of disease progression, making it challenging for healthcare systems to prioritise patients and leading to suboptimal treatments. This research uses DR and DMO data to learn more about how and when patients with diabetes progress to sight-threatening disease, and thereby better target future intervention at preventing the development of such disease.
Public benefit statement
A description in plain English of the anticipated outcomes, or impact of project on the general public.
There are two aims of this research. The first aim is to improve personalised management of patients with DR. The study will develop algorithms using clinical data and images to identify individual-level DR severity from a retinal image, and to identify presence of DMO, which quantify fluid biomarkers as well as retinal layers. This development work is also intended to create an individualised risk prediction score for progression to proliferative DR and/or DMO, the sight-threatening forms of this condition.
The second aim is focussed on personalised treatment of patients with DMO. The study will develop algorithms using clinical data and/or images to identify the presence of DMO, to infer anatomic/functional correlation in DR with or without DMO and to predict natural history of disease alongside short and long-term treatment responses, in particular to the use of anti-vascular endothelial growth factor agents. As well as providing patient benefit through improved understanding and individual risk prediction of disease progression, this study could impact public health under the NHS in the UK by reducing treatment burden and enabling hospital eye services to become more cost effective.
Latest approval date
The last date the data access request for this project was approved by a data custodian.
20 February 2024
Dataset(s) name
The name of the dataset(s) being accessed.
Moorfields Diabetic Macular Oedema and Diabetic Retinopathy Dataset
Access type
Determines whether the data will be accessed with an Trusted Research Environment (TRE) or via data release.
Data Licence Agreement. Data released to a secure and controlled environment under contract with the research applicant.
Data sensitivity level
The level of identifiability of the data being accessed, as defined by Understanding Patient Data.
Anonymised