Providing information for patients and professionals on research and clinical care in genetic types of diabetes.

Genetic Diabetes Nurses


An educational model for the integration of genetics into diabetes care

The team at the Royal Devon and Exeter Hospital, led by Prof. Andrew Hattersley, Dr Maggie Shepherd and Prof Sian Ellard have received funding from the Department of Health for a project exploring ways of increasing the integration of molecular genetic testing into diabetes care.

There have been considerable scientific advances in the study of the molecular genetics of monogenic diabetes. However the best way to disseminate and integrate this information into clinical practice is uncertain.

This project involves experienced diabetes specialist nurses, who receive training about monogenic diabetes and genetic testing. Each of these Genetic Diabetes Nurses are based in a different location in the UK. Within their region they aim to increase knowledge of health care professionals about monogenic diabetes and genetic testing. This may be achieved by giving presentations at diabetes centres and local / regional meetings. The nurses assist in identifying which families are likely to have monogenic diabetes and which diagnostic genetic test would be the most appropriate. They can also discuss the implications with the families and guide follow up for the family members if a positive genetic test result is received.

Monogenic diabetes accounts for approximately 1% of UK diabetes (~20,000 people) (Shepherd, 2001a). In these cases a clinical diagnosis may be confirmed by molecular genetic testing for which Exeter is the UK NHS referral centre. A differential diagnosis can guide optimal treatment, help genetic counselling and explain co-inheritance of apparently unrelated features. Diabetes professionals are often unfamiliar with the key characteristics of monogenic forms of diabetes, and so misdiagnosis is common, resulting in inappropriate advice and treatment (Shepherd, 2001b). For example patients with diabetes due to a mutation in HNF1alpha are sensitive to sulphonylureas and often achieve better glycaemic control on a very small dose of tablets compared to insulin injections. Mutations within the glucokinase gene cause mild, stable hyperglycaemia which does not require treatment, but in children may be misdiagnosed as Type 1 diabetes.

Many members of diabetes teams (paediatric and adult) are unfamiliar with the latest genetic findings, and unsure of the most appropriate treatments. The Genetic Diabetes Nurses aim to improve awareness, understanding and recognition of monogenic forms of diabetes, leading to an increase in the number of patients accurately diagnosed and treated.

Not all regions in the UK are covered at present.  We are always looking for experienced Diabetes Specialist Nurses to work as Genetic Diabetes Nurses in areas not currently covered.  If you are interested and would like more details, please contact Maggie Shepherd - Email: or Tel: +44 (0) 1392 408261.

Any diabetes teams that would like an update from the Genetics Diabetes nurse in their region, or would like to discuss any possible cases of monogenic diabetes, can contact their local nurse direct. To find out how to contact the Genetic Diabetes nurse in your region


Shepherd M, Sparkes AC, Hattersley AT (2001a) Genetic testing in Maturity Onset Diabetes of the Young (MODY): a new challenge for the diabetes clinic. Practical Diabetes International. 18(1):16-21.

Shepherd M. (2001b). Recognising maturity onset diabetes of the young. Journal of Diabetes Nursing. 5(6):168-172