May 2016

National autism registry to put spotlight on ‘huge gap’ in services

Excellent article in the Irish Times on 10 May highlighting the clinical, health and social needs of those affected by ASD


April 2016

Prof. Louise Gallagher spoke about the transformative benefits of the Irish autism registry Listen to the podcast here

Tune in to   to hear Louise Gallagher talk about the benefits of the autism registry


On 15 January 2015 a Technical Meeting for the Autism & Neurodevelopmental Disabilities Registry & Biobank took place. The findings of the national consultation were presented. We were very fortunate to welcome leading international Experts in this field who presented on other excellent  international registry models. A discussion of next steps and identifying a concrete path forward based on both the Consultation findings as well as local and international best-practices in registries and biobanks was discussed following these insightful presentations. Read full consultation report here:

Report of the Consultation for a National Registry and Biobank for Autism and Neurodevelopmental Disorders for website

The presentations of the Technical Meeting can be viewed here:

Government Driven Model

Pål Surén,  Norwegian Institute of Public Health

Patient Advocacy Group Model

Phelan-McDermid Syndrome International Registry – PMSIR Patient Advocacy Group Model                                                                                                                                               Alison Turner,  PMSF Regional Rep UK & IReland

Involving families in ASD research changing research capacity

Dr Jeremy Parr, Newcastle University, UK


In the Media:

  •  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.