Background
The Irish Autism Registry is an initiative developed by a joint collaboration between researchers from Trinity College Dublin and the National University of Ireland, Galway.
The goal of the Irish Autism Registry is to lead to advancements in understanding and treating autism spectrum disorders (ASDs) and neurodevelopmental conditions, inform the development of clinical practice and services, and facilitate future research.
Consultation Process
To accomplish this goal, Autism Speaks provided funding to the Irish Autism Registry to carry out a National Stakeholder Consultation Process. The consultation process allowed the community the opportunity to highlight critical issues and concerns, and to have their view heard. The aim of the Consultation was to engage with stakeholders affected by or involved in service provision to people with autism or other related neurodevelopmental disorders. We also wanted to learn more about the needs of the community and what kinds of information is most helpful to record in a clinical registry. Additionally we sought community feedback on the development of a biobank to support biomedical research.
Presentation of the National Consultation Findings
The findings of the national consultation were presented on 15 January 2015. We were very fortunate to welcome leading international experts in this field who presented on other excellent international registry models.
Click here for more news about this meeting and to view the international experts presentations.