Apr 02 2015 Posted: 16:36 IST

The findings from the national stakeholder consultation process present “compelling evidence of the timely need to create a comprehensive registry and biobank.”

93% of respondents to a national survey believe that a registry and biobank for autism in Ireland is needed, according to the findings from a nationwide stakeholder consultation process launched today on World Autism Awareness Day.

The consultation process engaged with all stakeholders affected by or involved with autism or other related neurodevelopmental disorders including self-advocates, families, clinicians, health professionals, service providers, advocacy agencies and researchers. The aim of the initiative is to advance world-class clinical, biomedical and environmental research in Ireland and inform best practice in health, education and service provision for individuals with ASD/ NDD and enable the best possible quality of life.

The Autism and Neurodevelopmental Disorders Research Group at Trinity College Dublin partnered with the Irish Centre for Autism and Neurodevelopmental Research (ICAN) at NUI Galway and the US-based Autism Speaks for this initiative. The consultation process was launched following a private members bill, The Autism Bill, brought forward to Government in 2013 and the National Review of Autism Services in 2012, both of which called for the creation of a national database for Autism Spectrum Disorders (ASD) and neurodevelopmental disorders (NDD).

The authors of the report and the respondents believe the biobank and registry would support policy decisions by providing reliable information on the scale of these conditions in Ireland as well as their social and economic costs. The key concern most respondents had was around the area of data privacy and protection and in particular who would have access to the data.

Currently in Ireland there is no effective health information system or biobank gathering essential data for ASD/NDD, nor are there any accurate prevalence rates, despite the fact that ASD and NDD are lifelong conditions which have significant implications for families, state services, society and the individuals themselves.

Professor of Child and Adolescent Psychiatry at Trinity, Louise Gallagher said: “It is clear from the responses of those who took part in the national survey and the regional town hall meetings that there is a huge and positive appetite for the establishment of a registry and biobank for Autism in Ireland. Parents said it was the first time they had ever been asked what would make their child’s life better.”

Professor Gallagher continued: “It is now timely to act and invest resources to build this registry and biobank with the potential to alleviate the rising financial and resource challenge on Irish public health system and align with upcoming government health strategies, e.g. Progressing Disability Services for Children and Young People. This is Ireland’s opportunity to propel world-class research and its application for the public good with an innovative unique registry and biobank for a major public health challenge.”

Dr Geraldine Leader, Director of the Irish Centre for Autism and Neurodevelopmental Research at NUI Galway commented that: "The lack of reliable and systematic information on ASD/NDD not only affects children with these conditions but also impacts adolescents, adults and older adults. There are huge gaps in service provisions and care for adults and the elderly with ASD. They can be left undiagnosed, receive inappropriate services or struggle with no access to proper enabling environments which would assist with employment and independent living. The development of an autism specific registry and biobank targeted at the health, educational and long term needs of the Irish autism community will be a vital resource to inform service planning and delivery and will also support a range of important research questions.  The Irish Autism Registry and Biobank will be transformative in accelerating the pace of autism research in Ireland.”

June O’Reilly, parent and chairperson of the stakeholder advisory group spoke about the benefits from a parent’s perspective: “When you receive a diagnosis for your child there are so many questions that you search for answers to in order to maximize your child’s potential. Questions like what interventions should my child be getting, what type of education would be best, or how will they progress as they get older.  The registry gives all stakeholders an opportunity to work in partnership and address these questions.  It will help indicate the most effective approaches, throughout the lifespan from early intervention and treatments for young children through to adulthood, giving informed feedback to parents and stakeholders about best outcomes.”

She continued: “I am excited about the registry and biobank as I see it impacting best-practice service provision and education for our children, leading to research discoveries in new treatments and empowering our children who have immensely inspirational strengths and talents.”

Dr Amy Daniels, Assistant Director of Public Health Research from the US-based Autism Speaks said: "We are excited to present these findings from the stakeholder consultation, as they document an overwhelming support from the community for developing a national registry for autism and related neurodevelopmental disabilities in Ireland. From the perspective of the advocacy community, our hope is that the registry will be a valuable tool for informing how best to enhance services and the quality of life for individuals with autism and their families now and in the future."

The collaborative research team are currently in the process of developing and implementing a pilot registry and are working on this with OpenApp, who provide Quality Assurance and Disease Registry type software solutions for Healthcare within the Irish and other health service settings.

The full report on the Consultation for a National registry and Biobank for Autism and Neurodevelopmental Disorders is available here: www.iarb.ie/national-stakeholder-consultation-report/

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