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
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April 2016
Prof. Louise Gallagher spoke about the transformative benefits of the Irish autism registry Listen to the podcast here
Tune in to @PatKennyNT #voicesfromthespectrum to hear Louise Gallagher talk about the benefits of the autism registry
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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:
The presentations of the Technical Meeting can be viewed here:
Pål Surén, Norwegian Institute of Public Health
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.
- Prof. Louise Gallagher discusses the Autism Registry and Biobank Consultation on the
Morning Edition (16/01/14) (piece around 58 minutes into broadcast)
http://www.rte.ie/news/player/morning-edition/2014/0116/