A National Dementia Registry for Ireland: A Feasibility Study
This study was commissioned by the Alzheimer Society of Ireland to generate an evidence-based discussion document on the feasibility of a national dementia registry for Ireland. It specifically aimed to review patient registry models in Ireland and examine their function and operation; review dementia registries that exist in other jurisdictions; identify the legal, ethical, clinical, IT systems and financial issues crucial to the development of a national dementia registry; and progress evidence-based policy recommendations for improved dementia recording in Ireland. A rapid review of the literature was undertaken, semi-structured interviews were conducted with national and international experts, and the perspective of people with dementia was obtained. The study identifies four main functions of patient registries: to inform public health policy; improve patient care; support health research; and facilitate health technology assessment. The report reviews existing best practice guidelines on patient registries, and summarises the guidance they provide. The study reviews dementia registries developed in Sweden, Denmark, Spain and the USA. It reviews the strategic policy framework and the legal and regulatory context in Ireland. The findings from the thematic analysis of expert interviews and focus groups focus on six themes: registry function; registry data; data collection; data management; registry governance; and legislation. The report sets out the learning from existing patient registries and questions that need to be asked and decisions that need to be made on the road to setting up a national dementia registry for Ireland, reported under five headings: getting started; determining the scope and design of the registry; ensuring the sustainability of the registry; delivering a quality dementia registry; and advocating for strategic policy and legislation to support patient registries.
Hopper, L., Hughes, S., Burke, T. Irving, K. (2016) A National Dementia Registry for Ireland: A Feasibility Study, Dublin: Alzheimer Society of Ireland.