New evidence from the US Centres for Disease Control and Prevention indicates one in 68 children, including one in 42 boys, has an Autism Spectrum Disorder
On World Autism Awareness Day, Wednesday, 2 April 2014, the Irish Centre for Autism and Neurodevelopment Research (ICAN) at NUI Galway is inviting the public to 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 US advocacy group, Autism Speaks, is working to develop an Irish Autism / Neurodevelopmental Registry and Biobank to inform research and long-term public policy decisions around autism.
Dr Geraldine Leader, Director of ICAN, underlined the vital role this national resource will play and encouraged members of the autism community families, researchers and service providers to complete the online Irish Autism / Neurodevelopmental Registry and Biobank survey.
The survey can be completed at www.iarb.ie
The Irish Autism Registry will serve as a national resource for research in the areas of health, education and social services and to inform policy development related to autism. Clinical registries will gather detailed information on autism in Ireland to inform the development of clinical practice, services and future research.
Dr Geraldine Leader said: “There is an urgent need to establish a registry and biobank to inform the development of clinical practice, services and future research in Ireland. Given the potential implication of this initiative for the Irish community, we are currently conducting a national consultation process. The aim of the consultation is to provide detailed information about the specific needs of the community and what kind of information should be included in a registry and biobank. As part of this process, we would encourage members of the autism community, families, researchers and service providers to complete our online survey at www.iarb.ie”
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.
Autism Speaks is the world’s leading autism science and advocacy organisation, and over the last nine years has funded awareness, advocacy and research into the causes, prevention, treatments and a cure for autism.
Autism Speaks Board Member and NUI Galway graduate Adrian Jones said: "As recently as last week's Centres for Disease Control announcement, we've seen in the US the impact that data collection is having on autism awareness which, in turn, is driving improvements in both the provision of care for those affected by autism and our understanding of the condition. The families who participate in this Irish initiative will be empowering those who are demanding better services in Ireland, while also making a powerful contribution to global autism research."
NUI Galway President Dr Jim Browne said: ‘ICAN’s research and in particular the Irish Autism / Neurodevelopmental Registry and Biobank can help to shape the delivery of care for those with autism in the coming years and highlight the ongoing need for improved services for those living with the condition.’
Registries and biobanks have effectively been used in other health areas such as cancer and stroke in Ireland. Some of the best known examples of registries are those that exist in Scandinavian countries where there are well established patient registries which have helped not only to uncover important risk factors for autism but also to inform improvements to systems of care for affected families. The development of a registry will address a range of research questions including:
- The scale of autism in Ireland across the lifespan.
- The behavioural 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.
Autism Speaks Campaign ‘Light it Up Blue’ works with a range of partners to light up major global landmarks in order to draw attention to the issue of autism annually on World Autism Awareness Day.