First Consultation for a National Autism Registry and Biobank Held at Trinity

Posted on: 21 January 2014

The first of four consultation meetings to seek stakeholder input in relation to plans to form a National Autism Registry and Biobank in Ireland took place recently at Trinity College Dublin. The meeting prompted open and positive discussion from members of the autism community, including both families and service providers.

The Autism and Neurodevelopmental Disorders Research Group at Trinity is partnering with the Irish Centre for Autism and Neurodevelopmental Research (ICAN) at the National University of Ireland, Galway (NUIG), and the US-based Autism Speaks in this initiative.

People affected by or involved in service provision to people with autism or other related neurodevelopmental disorders discussed the need for a clinical registry, the specific needs of the community, and the kind of information that would need to be collected. Feedback was also collected about the proposed ‘biobank’, which would store biological materials for use in biomedical research. Both the proposed clinical registry and biobank would house data anonymously to protect privacy. 

Professor of Child and Adolescent Psychiatry at Trinity, Louise Gallagher, said: “We were delighted with the positive response and interest shown. We had a sense that the community feel that this type of initiative is long overdue. We are looking forward to our future meetings in Galway, Cork and Sligo and feedback from our online survey. We aim to provide feedback to the community to celebrate World Autism Day, on April 2nd.” 

Autism and related neurodevelopmental disorders are lifelong disabilities urgently requiring better strategies for detection, therapies and supports. The proposed clinical registry would gather patient data to inform the development of clinical practice, services, and future research. It would enable research into the scale of autism in Ireland, the health and medical needs of the community, factors affecting successful school placement, and factors relevant to improving the quality of life among sufferers.

Biobanks have become key resources to support medical research. They house biological samples, such as blood and saliva, taken from affected individuals. These samples are then used by researchers, who consider the genetic factors associated with these diseases. Biological samples are also used increasingly by pharmaceutical companies with the aim of developing new drugs and treatments.

Many Irish families previously participated in the AGP Simplex Collection (TASC) research, which was led by Trinity. This provided almost 2,000 biological samples that were used to expand understanding of the genetics of autism. Research using these samples showed great promise, showing that rare genetic changes could cause autism. However, there is now a need for many more samples to progress related research.