The International Transient Neonatal Diabetes Register aims to collect information about an individual with transient neonatal diabetes, their family history in relation to this condition and clinical details on how their diabetes first presented.
The information collected will include names and addresses so that we can contact them in the future to find if there are any new developments in that individual’s diabetes and update them on research studies. We are developing this database with funding from Diabetes UK one of the major organisations involved with Diabetes.
By gathering this information we hope to understand more about neonatal diabetes. In particular we hope to learn:
1. about the long term effects of the condition and why diabetes comes back in some people
2. how the symptoms that are seen in the clinic relate to the way in which this condition is inherited through the family.
3. what are the best ways to treat TND.
We also want to keep a record of those people who are and are not interested in being approached about future research. This means our approach can be more coordinated and we will not contact anyone that is not interested. Although this research may not provide information that is significant to an individual, it should help us to provide a more comprehensive picture of an individual’s condition and in the long run provide us with information that could help everyone with TND.
The register is a confidential, computer record, specifically about individuals with Transient neonatal diabetes. It will be stored in accordance with the principles of The UK Data Protection Act 1998.
When an individual receives a positive result for TND related to a genetic alteration of chromosome 6 (6q24), they will be given an information sheet and a consent form. If they agree to take part then we will then ask the individual’s doctor to send us clinical details about how the diagnosis came about. We will also ask to have access to full medical records in order to get a full clinical picture.
We follow up every 5 years with a questionnaire about the current state of health and if the diabetes has returned, any other features of the condition, new family history and some questions about life-style.
The information we store will be available to: