Questionnaire

The role of the registry is to collect patient-entered, real-world health and experience data, supplemented and verified by medical professionals. The information collected can be used for the following purposes (when approved by governance committee): 

• to help facilitate scientific, academic and clinical research,

• to track the natural history of the condition,

• to compare against eligibility criteria and inform participants if they are suitable for a clinical trial,

• to generate evidence on current care provision and help to develop national standards,

• to support clinical trial feasibility studies,

• to disseminate relevant information and news to the UK DM community.

We ask you to complete the questionnaires for the first time when you register, then once a year you will receive an email reminder to log in and update your answers. Your data helps to build a detailed and valuable long-term picture which can help researchers study how the condition affects individuals and different groups of people. 

There are currently two questionnaires available to complete in the registry, please click below to see an overview of each. 

• Patient Questionnaire (for patients only) 

• Medical Questionnaire (for patients and clinicians) 

For more detailed information on the registry dataset, or to request a registry data report or targeted recruitment services, please contact the registry team with details of your research requirements.