Diabetes registry for people aged less than 18 years at diagnosis
Research type
Research Database
IRAS ID
178253
Contact name
Richard J. Q. McNally
Contact email
Research summary
A set of regional diabetes registries for children and young people living in England and aged less than 18 years at diagnosis
REC name
North East - Newcastle & North Tyneside 1 Research Ethics Committee
REC reference
17/NE/0011
Date of REC Opinion
10 Feb 2017
REC opinion
Further Information Favourable Opinion
Data collection arrangements
If one of the ten regions in England opts to set up a registry through Newcastle University, all patients with diabetes aged under 18 years at diagnosis and residing within the region (eg. East Midlands) will be eligible for inclusion. Informed consent must be obtained from patients aged over 16 years. A parent or caregiver will also be required to give informed consent if the patient is less than 16 years. Patients aged between 10-15 years will sign an assent form to evidence they agree to having their personal information as part of the registry.
Once the necessary consent/assent is gained, routinely collected medical and personal information will be extracted from the patient’s hospital record by staff in the hospital. If consent is refused only a limited anonymised dataset will be extracted for audit purposes. All personal identifiers will be removed.
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 in the Sir James Spence Institute, Royal Victoria Infirmary. Access to the data will be restricted to limited number of registry team members.
Research programme
A registry will enable effective planning of services for people with diabetes, particularly those diagnosed aged less than 18 years and living within one of the specified catchment areas (eg. East Midlands). 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.
Research database title
A set of regional diabetes registries for children and young people living in England and aged less than 18 years at diagnosis
Establishment organisation
Newcastle University
Establishment organisation address
International Centre for Life
Central Parkway
Newcastle upon Tyne
NE1 3BZ