What is a Clinical Registry?
Clinical registries gather information and other data on patients to inform the development of clinical practice, services and future research.
Some of the best-known examples of registries are those that exist in Scandinavian countries where there are well-established patient registries for a variety of physical and mental illnesses and disabilities. These well-organised registries provide critical data that are useful for the development of services and to identify critical research questions.
Why do we need a registry for ASD and related neurodevelopmental disorders?
The need for this registry is urgent to address critical questions concerning ASD and related conditions in Ireland.
The Registry has a wide range of benefits including:
- Services: This registry and the comprehensive data collected will inform health, education and social participation services. By improving services, the child has a better chance of reaching their full potential and living a fulfilled life.
- Future-proofing: This registry will provide longitudinal data which will in turn be used for the future proofing of services.
- Research: The registry will inform all future research into ASD.
- Understanding: It will give a snapshot and insights into of what life is like with autism and the needs that go with it.
This registry will serve as a national resource for research in the areas of health, education and social services and to inform policy development. In March 2013, a private members bill, The Autism Bill, was brought forward to government to require the development of a national strategy for autism, including the development of a national registry providing an accurate estimate of the number of people with ASD in Ireland.
A registry will address a range of topics including:
- The scale of autism in Ireland across the lifespan
- The behavioral health and medical needs of the Irish autism community
- The impact of early intervention on later outcomes
- Factors that influence successful school placement
- Factors that influence improved quality of life among adolescents and adults with autism
- Planning for transitions in service delivery, e.g. from pre school to school, from school to adult services