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How is information collected about me by the ASCEND-Eye study?

The information we collect about your eye health comes from three main places:

  1. From the follow-up questionnaires you completed every 6 months during the main ASCEND trial (this activity is now complete)
  2. From your completion of the one-off ASCEND-Eye Visual Function Questionnaire that was posted to you at the end of ASCEND (this activity is now complete)
  3. From the NHS Diabetic Eye Screening service that individuals with diabetes are invited to attend on a regular basis (this activity is ongoing) 

In order to obtain results from your eye screening appointments, we send information that identifies you (including your NHS number and unique ASCEND participant ID number), to the NHS Diabetic Eye Screening Programme you attend. They link this information to their records of your diabetic retinopathy grades since you began the ASCEND trial, and then return the results to us via a secure route.

Each screening programme holds data for the geographical area that they serve. Some screening programmes do not have staff with the required computer skills to perform this type of data linkage. They have the option to allow the company which provides the software used during the screening, to perform this task on their behalf.