Professor Edna Roche

Summary

Diabetes Epidemiology: Childhood Type 1 diabetes (T1D), fatal if untreated is associated with major life limiting complications if poorly controlled. Good diabetes management requires accurate disease data. No such data were available in Ireland. Following a baseline study of national T1D epidemiology, the Irish Childhood National Diabetes Register (ICDNR), a core infrastructure in childhood diabetes, was established to provide accurate data regarding T1D in children and young people in Ireland. The ICDNR now in its 12th year, is governed by a highly skilled Steering Group, with a broad range of expertise (Medical, Nursing, IT, Statistics, Health Informatics). It has extensive collaborations: International (Eurodiab, NI Register, Hvidore, ISPAD) and National (Paediatricians, Diabetologists, RCPI, PCRS, HSE, Diabetes Ireland, TUD (formerly IT Tallaght). As a result of our work accurate national data are available for the first time to inform health planning, resource allocation, enable audit, research and optimise clinical care. Targeted interventions are now possible as patient subgroups are identifiable. Robust data and forecasts are provided to the HSE (by ICDNR). Reliable incidence data are available ( considered "a Basic Health Indicator" by WHO), of national and international importance and Irish T1D epidemiology monitored. Prevalence Modelling: Current research includes prevalence modelling and forecasting in T1D in association with Professor Myra O'Regan, Department of Statistics and Computer Science. Diabetic Ketoacidosis Prevention: Some children develop severe metabolic decompensation (Diabetic Ketoacidosis, DKA) at diabetes diagnosis which can be fatal or result in a trajectory of poor metabolic control with increased diabetes related complications in adult life. This is of major international concern. The Irish Childhood Diabetes National Register (ICDNR) is monitoring national DKA rates before and after a 2 year collaborative national DKA prevention campaign to gain insight into factors associated with the development of DKA and its prevention. Analysis of the baseline data demonstrates a very high rate of DKA at diagnosis in those with T1D. The intervention phase is in progress with print and radio campaigns and targeted campaigns directed at healthcare professionals. A digital campaign has been developed for phase two. This study is a collaboration involving Diabetes Ireland, TUD (formerly IT Tallaght) and the ICDNR.

Funding Agency

National Children's Hospital Foundation

Project Type

National Epidemiological Register of Type 1 diabetes

Person Months

108

Summary

Eurodiab is an international collaboration of 26 European Childhood Diabetes Registers representing 22 countries. Following assessment and site visit the ICDNR has been a participant since 2011. Eurodiab monitors the epidemiology of T1D across Europe exploring trends in incidence which may ultimately provide clues to the underlying aeitology.

Programme

EURODIAB

Project Type

Collaboration of international diabetes registers

Summary

Down Syndrome (DS) or trisomy 21 is one of the most common congenital genetic conditions. Ireland is thought to have the highest incidence of DS in the world. While much is known about Down Syndrome there is much that we need to learn. The National Register for Children with Down Syndrome was established in 2015 to increase our knowledge about Down Syndrome in Irish children with the ultimate aim of improving the quality of care and quality of life for children with DS and their families. The unique prospective National Register for DS was developed in 2015, with extensive collaborations. The DS register is a key infrastructure to provide reliable data to inform clinical care, support audit, research and enhance the quality of life for children with DS and their families. This prospective national Register will define the epidemiology of Down Syndrome in Ireland and provide data to inform appropriate healthcare planning, clinical audit, and enable monitoring of the implementation of the medical management guidelines for those with DS (MMG) developed by our group. These data, including the number of children born with Down syndrome in Ireland each year, the area in which they live etc ,will enable more informed decision making and optimise resource allocation leading to better clinical outcomes. The Register will also expand our knowledge of DS. It will help ascertain if certain problems and illnesses are more prevalent or more severe in children with Down syndrome. It will provide more accurate evidence based information for counselling families and may enable screening programmes or early intervention to prevent avoidable secondary disability which has been so successful for those with DS who develop thyroid disease for example. The immediate research plan is to define incidence, demographics and co-morbidities in newborns with DS. The longitudinal arm will explore the natural history of co-morbidities, complications, access to and health care utilisation etc. In addition Down Syndrome provides an important model to evaluate immune function. Through defining the epidemiology and systematically studying the issues faced by children with DS and their families the DS Register will enhance the health and well being of Children with Down syndrome in Ireland. The DS Register is governed by a Steering Group with a broad expertise and includes parent representation. The Register is hosted by Tallaght University Hospital and funded by the NCHF.

Funding Agency

National Childrens' Hospital Foundation (NCHF)

Project Type

Prospective national register

Summary

Intervention to improve youth question-asking and provider education during paediatric diabetes visits.

Funding Agency

National Childrens' Research Centre NCRC

Project Type

RCT of Behavioural intervention