19649
National Stakeholder Consultation for a National Registry for Autism and Related Neurodevelopmental Disorders
Autism Spectrum Disorders (ASD) and related Neurodevelopmental Disorders (NDD) are chronic conditions requiring accurate information concerning the needs of individuals and families for resource and service planning and to support research. Ireland lacks an effective health information system concerning the health, educational and social needs for ASD. A National Intellectual Disability Database (NIDD) explicitly excludes diagnosis and is not universally appropriate in ASD. Therefore there is a need for an ASD/ NDD registry to support research and health service planning. Additionally a national, standardised repository of biological specimens for a range of conditions to support biomedical research has been proposed nationally. A linked ASD registry/ biorepository could broadly support health services and biomedical research. We undertook a national stakeholder consultation to determine the factors that might influence engagement and to determine an appropriate model for the registry/ biorepository.
Objectives:
The overarching objective was to engage stakeholders in the community including individuals, families, service providers and government agencies. Specifically to 1/ develop and pilot a questionnaire regarding need and utility of a registry/ biobank 2/ convene town hall meetings for qualitative feedback 3/ engage with government agencies responsible for commissioning of services and 4/ seek feedback from stakeholder and technical advisory groups to further inform on the model.
Methods:
Meetings with a stakeholder group and government officials were convened to seek opinion on the development/ model of the registry. A survey was developed and piloted at a conference for families and professionals in June 2013 in NUIG. Four town hall meetings were convened and qualitative feedback obtained. The survey was launched online and targeted through social medical, advocacy groups and professionals mailing lists. A technical advisory provided feedback regarding engagement with stakeholders and government agencies and the proposed model.
Results:
The online survey elicited 724 respondents, the majority from parents (72.1%) with a smaller number of individuals with ASD (4.3%) and professionals (14.3%). There was overwhelming support for the development of a registry (93%). Responses suggested that the focus should be health, education and social care service development. Point of diagnosis was identified as an optimal time to put data into the registry but identified that lack of time could be a potential barrier. Concerning the biobank, 84% were supportive and 77% thought they would contribute samples. Concerns were expressed about data privacy, confidentiality and inappropriate access to biosamples (e.g. police or insurance companies). Qualitative themes emerging included a sense of urgency and timeliness for the initiative but also a minority feared that data could be used to deprive people of services or to ‘cure’ autism.
Conclusions:
The ASD community in Ireland overwhelmingly supported the development of a registry/ biobank. Feedback indicated that a parent driven/ researcher led initiative might be the most appropriate model. The next phase of the initiative will be a pilot registry and biobank in a defined geographical region.