NUI Galway Centre for Autism Invites Public to Meet and Contribute to National Autism Registry and Biobank Consultation
Friday, 24 January 2014
Dr. Geraldine Leader, Irish Centre for Autism and Neurodevelopment Research at NUI Galway
International Evidence indicates one in 88 children, including one in 54 boys, has an Autism Spectrum Disorder
The Irish Centre for Autism and Neurodevelopment Research (ICAN) at NUI Galway is inviting the public to meet and engage in planning the future direction of the provision of services for those with autism in Ireland.
ICAN, in partnership with Trinity College Dublin and Autism Speaks, aim to develop an Irish Autism Registry and Biobank. Autism is a lifelong disorder and has profound effects on an individual’s social, emotional and cognitive development, and has implications for the family, state services and society at large.
A Stakeholder Consultation Process is underway to take account of the needs and perspectives of individuals with autism and other related neurodevelopmental disorders and the perspectives of their families.
As part of the consultation process there will be regional public consultation meetings held around the country, which all are welcome to attend. NUI Galway will host a meeting on the 28th January at the Fottrell Theatre, Arts Millennium Building at 7pm. For additional information on public meetings visit www.iarb.ie
International evidence indicates a significant rise in the prevalence of this condition, as reflected in the recent data from the US-based Centers for Disease Control and Prevention, which estimates that one in 88 children, including one in 54 boys, has an autism spectrum disorder. By way of comparison, these estimates represent more children are currently diagnosed with autism than diabetes, AIDS, cancer, cerebral palsy, cystic fibrosis, muscular dystrophy and Down syndrome combined.
Dr. Geraldine Leader, Irish Centre for Autism and Neurodevelopment Research at NUI Galway commented, “The need for a registry of Autism Spectrum Disorder (ASD) and related neurodevelopmental disorders will address critical questions concerning ASD and related conditions in Ireland, there is an urgent need for a comprehensive registry. This registry will serve as a national resource for research in the areas of health, education and social services and to inform policy development.”
Clinical registries will gather clinical information and other data on patients to inform the development of clinical practice, services and future research. Some of the best-known examples of registries are those that exist in Scandinavian countries where there are well-established patient registries for a variety of physical and mental illnesses and disabilities for many years. These well-organised registries provide critical data that are useful for the development of services and to identify critical research questions to be further investigated.
The Development of a registry can address a range of research topics that may include:
- The scale of autism in Ireland across the lifespan.
- The behavioral health and medical needs of the Irish autism community.
- The impact of early intervention on later outcomes.
- Factors that influence successful school placement.
- Factors that influence improved quality of life among adolescents and adults with autism.
- Planning for transitions in service delivery, e.g. from preschool to school and from school to adult services.
Author: Marketing and Communications Office, NUI Galway