National Autism and Related Neurodevelopmental Disorders Registry
Welcome to the website for the Irish Autism and Neurodevelopmental Registry and Biobank (IARB). We are delighted to announce we will be launching Ireland’s first autism registry in the coming weeks, beginning with a pilot in County Kildare. Keep an eye here for updates
A national stakeholder consultation process was conducted to obtain the perspectives of parents, self-advocates, service providers and researchers on the development of a national registry and biobank for ASD/NDD in Ireland. The consultation was comprised of a series of town hall meetings throughout Ireland and a national web-based survey which gave all members of the autism community, including service providers, the opportunity to voice their opinions and concerns.
Findings from the national consultation indicated overwhelming support for the development of an ASD/NDD biobank and registry in Ireland. From the parents, self-advocates and service providers who completed the survey, the most important role of the registry/biobank will be to inform health, education and social care aspects of service development. The primary concern emerging from both the consultation process and survey was around data privacy and protection.
Thank you all for your participation and contributions to this important initiative!