The Irish Childhood Diabetes National Register established in 2008 is
a HIQA recognised National Data Collection and EURODIAB* participant.
Irish Childhood Diabetes National Register
Did you know there is a National Register for Children and Teens with Type 1 Diabetes? It is officially called the Irish Childhood Diabetes National Register, or ICDNR and has been in place since 2008.
Why is a Register important?
Diabetes Registries allow the monitoring of the frequency of diabetes in populations worldwide. This is important as it then allows tracking of this important condition to help us understand more about it and ultimately what causes diabetes. Monitoring has shown that Type 1 diabetes is becoming more common in children and adolescents in most countries. Monitoring of the occurrence of diabetes in populations also allows improved healthcare planning and appropriate resource allocation which ultimately results in enhanced patient care. Most countries have established registers of Type 1 diabetes for these reasons.
Limited data regarding Type 1 diabetes were available for Ireland prior to the development of the National Diabetes Register in 2008 with Ireland thought to have one of the lowest rates of diabetes in childhood and adolescence in Europe. However, the 1997 national incidence study conducted by the researchers from the University of Dublin, Trinity College Dublin and National Children’s Hospital demonstrated that Ireland had a high rate of diabetes, in the top 25% for Europe. (1) Ireland continues to have a very high incidence of T1D in children and adolescents aged under 15 years and continues in the top 25% worldwide. (2,3)
In 2009 a study revealed that the incidence of Type 1 diabetes is increasing in most populations in Europe at a rate of 0.6 – 9.3%. Not only were incidence rates predicted to continue to increase for the foreseeable future, children appeared to be developing diabetes at a younger age (4). A multicentre prospective study published in 2019 (online first in 2018) shows an average 3.4% increase every year in the incidence rate. According to the study findings this could mean a doubling of new cases of diabetes in Europe within the next 20 years approximately. Findings were based on an analysis of >84,000 children from 1989-2013 registered within 22 European countries. (5)
To monitor this important condition in the Irish population researchers from the University of Dublin, Trinity College Dublin established the Irish Childhood Diabetes National Register (ICDNR).
When?
Since January 1st, 2008, all children/teenagers with newly diagnosed diabetes under the age of 15 years are offered the opportunity to join the ICDNR. To date the Register has been generously funded by the National Children’s Hospital Foundation and supported by Tallaght University Hospital.
Register Progress to date
The Register is making excellent progress. A massive amount of work, communication, and co-operation has been involved with the participation and backing of 20 Paediatric centres, Consultant and Diabetes Nursing Staff, Parents, and Children. Adult Endocrinologists are also contributing as part of a huge effort to ensure complete ascertainment of the under 15 population. The Register has tremendous potential to help people with Diabetes into the future. The Register provides anonymised data to the HSE to support its service planning for your diabetes care.
How can you help?
If you were under 15 years and were diagnosed with Type 1 diabetes after January 1st 2008 and were not offered to join the Register or you are not sure if you are registered – talk to your clinical team or email [email protected]
For further information
If you would like further information and/or forms, please click here to visit the Department of Paediatrics website at Trinity College Dublin.
Thanks
A huge thank you to all Parents and Children diagnosed with Type 1 diabetes since 2008 who have registered with the ICDNR. Thank you also to all Health care providers working with the Register, the National Children’s Hospital Foundation, Trinity College, Dublin and the Diabetes Ireland.
References:
1. Roche EF, Menon A, Gill D, Hoey HMCV. Incidence of type 1 Diabetes Mellitus in Children aged under 15 years in the Republic of Ireland. Journal of Paediatric Endocrinology and metabolism 15(8): 1191-4.
2. Roche EF, McKenna A, Ryder K, Brennan A, O’Regan M, Hoey H. The Incidence of Childhood Type 1 Diabetes in Ireland and the National Childhood Diabetes Register. The Irish Medical Journal, October 2014; 107(9):278-281.
3. Edna F. Roche, Amanda M. McKenna, Kerry J Ryder, Adrienne A. Brennan, Myra O’Regan, Hilary MCV Hoey. Is the incidence of type 1 diabetes in children and adolescents stabilising? The first 6 years of a National Register. Eur J Pediatr (2016) 175:1913–1919.
4. Patterson, Christopher C. Dahlquist, Gisela G. Gyurus Eva. Green, Anders. Soltész, Gyula and the EURODIAB study group. Incidence trends for childhood type 1 dioabetes in Europe during 1989-2003 and predicted new cases 2005-2020: a multicentre prospective registration study. Lancet 2009; 373:2027 -33.
5. Patterson C. C, Harjutsalo V, Rosenbauer J, Neu A, Cinek O, Skrivarhaug T, Rami-Merhar B, Soltesz G, Svensson J, Parslow R.C, Castell C,Schonenle E.J, Bingley P.J, Dahlquist G, Jarosz-Chobot Przemyslawa K, Marciulionyte D, Roche E.F, Rothe U, Bratina N, Ionescu-Tirgoviste C, Weets I, Kocova M, Cherubini V, Rojnic-Putarek N, deBeaufort C.E, Samardzic M, Green, A. Trends and cyclical variation in the incidence of childhood type 1 diabetes in 26 European centres in the 25 year period 1989-2013: a multicentre prospective registration study. Diabetologia (2019) 62:408-417.