NHS Digital Data Release Register - reformatted

Royal Devon And Exeter NHS Foundation Trust

Project 1 — DARS-NIC-147863-CCGZN

Opt outs honoured: Y, N

Sensitive: Sensitive, and Non Sensitive

When: 2016/04 (or before) — 2018/02.

Repeats: Ongoing

Legal basis: Informed Patient consent to permit the receipt, processing and release of data by the HSCIC

Categories: Identifiable

Datasets:

  • MRIS - Cause of Death Report
  • MRIS - Cohort Event Notification Report
  • MRIS - Flagging Current Status Report

Benefits:

Flagging of patients and controls records on the NHS register with the ONS will be necessary. This will enable information on when patients die and information on their death certificate to be used in this study. This flagging is crucial as the greatly increased death rate from ischaemic heart disease in patients with diabetes needs to be studies in depth.

Outputs:

The aim of the study is to establish an epidemiologically based sample of patients with diabetes within the Exeter region. The major objective will be to collect DNA from all consenting patients and controls. Genetic information will be combined with clinical information to identify genes and gene/environment interaction in the development of Type 1 and Type 2 diabetes and for diabetes related complications specifically retinopathy and ischaemic heart disease. The study has arisen from discussion at meeting held with patients with diabetes (through patients organisation Diabetes UK) who felt that further research into who developed diabetes and who developed diabetes complications is important. A patient is on the steering committee and has read and given suggestions on the protocol and patient information sheet.

Processing:

This study will be a central resource to allow both cohort and nested case/control studies. It will take place in both primary and secondary care as long as the individual doctors give their permission. The study will involve an integration of clinical information on patients from variety of sources which will be collected on the patient after he/she has given their permission and been recruited into the study. Flagging of patients and controls records on the NHS register with the ONS will be necessary. This will enable information on when patients die and information on their death certificate to be used in this study. This flagging is crucial as the greatly increased death rate from ischaemic heart disease in patients with diabetes needs to be studies in depth.

Objectives:

There is considerable evidence that genetic influences are in the development of diabetes. Evidence for this includes the clustering in families of disease, a high concordance rate in identical twins and migration studies. However the majority of Type 2 forms of diabetes are greatly influenced by environment as shown by the rapidly increasing prevalence in the last two decades. This does not represent an alteration in the population gene frequency but rather changes in the environment, specifically a reduction in physical activity and increased food consumption. Both major types of diabetes represents classical “complex disorders” with both gene and environment playing an important role. Diabetes is a major cause of morbidity and mortality and has been estimated to account for 10% of NHS spending and this is likely to increase. Therefore understanding how to prevent complications is a major health priority. Both genetic susceptibility and environment are involved in the development of complications involving the small blood vessels such as retinopathy and large vessels such as myocardial infarction and stroke. Each risk factor has its own genetic and environments determinants. It is therefore a priority to have a very large collection of patients with Type 2 diabetes and associate controls from a defined geographical region to enable this work into susceptibility to progress.