Irish Childhood Diabetes National Register (ICDNR)
Children’s Health Ireland (CHI) at Tallaght University Hospital and Trinity College Dublin.
2008
To develop and maintain an epidemiological register, of children and young people under the age of fifteen years, developing type 1 diabetes, not secondary to any other condition, in the Republic of Ireland.
19 participating centres nationally.
One smaller independent centre has merged with a tertiary centre in 2020.
Data collection began in January 2008 and is ongoing to date.
The purpose of this collection is to develop and maintain an epidemiological register, of children and young people under the age of fifteen years, developing type 1 diabetes, not secondary to any other condition, in the Republic of Ireland. Data is collected in hard copy format from all participating centres. Input to Microsoft Access Database on the Tallaght University Hospital server.
The data collection is used by the key Research staff working with the ICDNR project.
Location (urban/rural); date of birth; country of birth (if overseas -date of arrival in Ireland); ethnic group/origin; gender; date of diagnosis; source of referral; date of first Insulin Injection; hospital at which diagnosis was made; consultant responsible for care; symptoms and duration of symptoms (in days/weeks); blood results at diagnosis; height/weight at first discharge; number of brothers/sisters; birth order; birth history; birth weight, gestation (in weeks) mode of delivery); infant feeding; (exclusive breast feeding? (yes/no); age at first solid feed (in months)); BCG vaccination (yes/no); history of type 1 or 2 diabetes in immediate family (mother, father, brother, sister, twin); associated conditions/autoimmune disease; medical card (yes/no); private health insurance (yes/no).
Not available online.
No.
No.
Data is collected on an ongoing basis throughout the year at the point of care by local paediatric consultants/endocrinologists and diabetes nurse specialists. Cross-checks are carried out with centres frequently and at least quarterly. Data entered on proforma data sheets and centrally entered onto the register.
Not in use.
300 records created on average nationally.
Ongoing data collection. Publication of incidence data as years are closed, checked and verified.
Through relevant medical publications and presentations.
Requests to Steering Group for anonymous data.
No.
The Register provides data to the HSE to support service planning and resource allocation decisions to optimise the care of children with diabetes in Ireland.