165 Learning from Others: a Review of Dementia Registries and the Value of Dementia Data within the Irish Context

Background Since the 1980’s, the number of established dementia registries worldwide has grown considerably and new registries continue to develop (e.g. Cuba, Netherlands, Greece and Australia). Ireland does not currently collect data relating to dementia in any systematic way. A National Dementia Registry model has been commissioned by the National Dementia Office (funded by Dormant Accounts through the Department of Health) to address this gap. Methods Despite a growth in dementia registry numbers (30+), no international standard has emerged, nor does Ireland have national guidelines in relation to patient registries. We commenced with a review of research, volunteer, epidemiological, and quality of care registries to examine similarities and differences in their design, governance, data collection, outputs and perceived value, so that we can mirror and learn from these and determine the possibilities for value creation in an Irish context. Results Key models have emerged along with a willingness to share experiences and support our learning (e.g. France, Spain, Sweden, Norway and USA). Common data includes patient characteristics, diagnostic work-up, diagnosis, treatment (point in time) and service provider details. There is a clear shift towards quality models that identify variation in best practice, follow the patient over time (only Sweden to date), and provide feedback on performance in an effort to stimulate quality improvement and motivate change. No jurisdiction has perfect conditions. The creation of a registry can itself drive the change required to enable it to add value to the health system. Conclusion Existing dementia registries evidence the value that a dementia registry provides, in particular the fostering of clinical best practice and improvement in patient outcomes. Notwithstanding the challenges of integrated data collection in Ireland, these registry models illustrate that the time is right to develop a national dementia registry. The value and importance in having dementia data cannot be underestimated.