Irish Childhood Diabetes National Register

Did you know there is now a National Register for Children and Teens with Type 1 Diabetes? It is officially called the Irish Childhood Diabetes National Register, or ICDNR
Why?
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 it. 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 was available for Ireland. Ireland was 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 and National Children’s Hospital demonstrated that Ireland had a high rate of diabetes, in the top 25% for Europe.
A recent 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 are incidence rates predicted to continue to increase into the foreseeable future, children appear to be developing diabetes at a younger age.
To monitor this important condition in the Irish population we 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. The Register has been generously funded by the National Children’s Hospital Foundation.
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 Nurse Staffs, 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 is already helping the HSE in 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]
If you are already on the Register but are approaching 18 years or over, to stay on the Register we need you to give your own consent. This will give us your own permission as a young adult to retain your registration information given to us by your parent or adult carer when you were under 15 years old. You can do this from the age of 16-17 years. Signing this form is vitally important for the continuation of the Register.
If it is not signed, the valuable information you provided will be removed from the Register and it cannot continue to benefit all people with type 1 diabetes in Ireland both now and into the future.
You can obtain and sign a re-consent form at your next Outpatient Clinic visit, or download it at the link below for further information, and bring it with you to OPD.
It is in triplicate – (a copy for you, a copy for your medical chart, and a copy for the Register) Your Nurse Specialist and Consultant can help answer any queries you may have. They will also need to sign the form with you.
For further information
If you would like further information and/or forms, please click here to visit the Department of Paediatrics web site 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:
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 2002, 15(8): 1191-4
Patterson, Christopher C. Dahlquist, Gisela G. Gyurus, Eva. Green, Anders. Soltész, Gyula and the EURODIAB study group. Incidence trends for childhood type 1 diabetes in Europe during 1989 – 2003 and predicted new cases 2005 -2020: a multicentre prospective registration study. Lancet 2009; 373: 2027 -33