Establishing a North West England Paediatric Diabetes Registry
Research type
Research Database
Full title
Establishing a diabetes registry for children and young people aged le
IRAS ID
131249
Contact name
Richard J. Q. McNally
Contact email
Research summary
Establishing a North West England Paediatric Diabetes Registry
REC name
North East - Newcastle & North Tyneside 1 Research Ethics Committee
REC reference
14/NE/0052
Date of REC Opinion
12 May 2014
REC opinion
Further Information Favourable Opinion
Data collection arrangements
All patients with diabetes that are aged less than 18 years and living in the North West England (excluding North Cumbria) will be asked to consent to having some of their personal and medical data added to the registry. If the patient is less than 16 years a parent or caregiver will also be required to give informed consent.
If the necessary consent is gained, the patient's medical and personal information will be extracted from their hospital record. These data are already routinely collected as part of the patient's medical record. If consent is refused only a limited anonymised dataset will be extracted for audit purposes. All personal identifiers will be removed.
Staff in the hospital will extract the necessary data from the patient’s paper or electronic records. The data will be transferred over to the registry team through the NHSmail secure email system (nhs.net). The data will be added to the registry and stored in a partitioned area on a Newcastle University server. A limited number of registry team members will have the necessary security permissions to gain access. The registry will be set-up and maintained in the Sir James Spence Institute at the Royal Victoria Infirmary, Newcastle-upon-Tyne.
Research programme
A registry will enable effective planning of services for people with diabetes, particularly those diagnosed aged less than 18 years and living in North West England (excluding North Cumbria). It will provide an opportunity to study how treatment of diabetes can be improved; thereby helping to make sure that the best quality care is given to patients with diabetes. It will also help to understand what causes diabetes and so help prevent it. The information that is stored within the database will also be used for research purposes,for instance to assess where and when people are diagnosed with diabetes (incidence) and how common diabetes is (prevalence) within a specified area at a specified time. Such research could help identify the causes of diabetes and work towards identifying risk factors, both environmental and genetic. Furthermore, researchers other than the registry team may also request access to the data to carry out their own independent research. All applications will require the necessary ethical and regulatory approvals to ensure that patients cannot be identified or harmed in any way.
Research database title
Establishing a North West England Paediatric Diabetes Registry
Establishment organisation
Newcastle University, Institute of Health & Society
Establishment organisation address
SJSI, Level 4, RVI,
Queen Victoria Road,
Newcastle Upon Tyne
NE1 4LP