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Data Use Application 006

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 Burden in Patients with Age Related Macular Degeneration.

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.

Age-related macular degeneration (AMD) is the leading cause of blindness in the UK, Europe, North America, and many other regions around the world. In the UK alone, more than 200 people develop the blinding forms of this condition every single day. As world populations get older, the prevalence of AMD is also rising rapidly. In a study from the British Journal of Ophthalmology, it was estimated that 25% of people aged 60 years and over have the early or intermediate forms of this disease. Since their approval in 2007, the introduction of anti-vascular endothelial growth factor (VEGF) treatments, which block the bleeding and leakage of retinal fluid in patients with the “wet” form of AMD, have greatly reduced the occurrence of blindness from this condition. However, even when blindness is prevented, there is still a significant burden on patients as they typically require monthly or bimonthly injections for the remainder of their lives. There is also no treatment for the “dry” form of AMD. In this project, Roche will use advanced statistical modelling, with the Moorfields AMD Dataset through INSIGHT, to predict long-term progression and associated treatment burden for patients with AMD. Roche will use these models to develop new approaches to optimise the care of patients with this condition, ensuring they receive the right treatment plans at the right time - a step towards personalised care for patients with this condition.

Public benefit statement

A description in plain English of the anticipated outcomes, or impact of project on the general public.

As well as providing benefit to patients, this project will directly impact public health, both in the NHS and globally. By reducing treatment burden for patients, it will enable hospital eye services to become more cost effective. This is of particular importance in the UK where, since 2017, ophthalmology has become the busiest of all medical specialties, accounting for nearly 10% of all outpatient clinic appointments.

Latest approval date

The last date the data access request for this project was approved by a data custodian.

28 December 2022.

Dataset(s) name

The name of the dataset(s) being accessed.

Moorfields Eye Hospital NHS Foundation Trust AMD 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.


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