The Impact of Disease Registries on Advancing Knowledge and Understanding of Dementia Globally

Abstract

To help address the increasing challenges related to the provision of dementia care, dementia registries have emerged around the world as important tools to gain insights and a better understanding of the disease process. Dementia registries provide a valuable source of standardized data collected from a large number of patients. This review explores the published research relating to different dementia registries around the world and discusses how these registries have improved our knowledge and understanding of the incidence, prevalence, risk factors, mortality, diagnosis, and management of dementia. A number of the best-known dementia registries with high research output including SveDem, NACC, ReDeGi, CREDOS and PRODEM were selected to study the publication output based on their data, investigate the key findings of these registry-based studies. Registries data contributed to understanding many aspects of the disease including disease prevalence in specific areas, patient characteristics and how they differ in populations, mortality risks, as well as the disease risk factors. Registries data impacted the quality of patients’ lives through determining the best treatment strategy for a patient based on previous patient outcomes. In conclusion, registries have significantly advanced scientific knowledge and understanding of dementia and impacted policy, clinical practice care delivery.

Optimising the use of electronic medical records for large scale research in psychiatry

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A Review of Pseudomyxoma Peritonei: Insights Into Diagnosis, Management, and Prognosis

“…Further exploring the pathophysiological mechanisms underpinning PMP is imperative to glean comprehensive insights into the disease's aetiology and progression. A deeper understanding of the biological mechanisms driving PMP enables researchers to devise more targeted and effective treatment strategies, potentially yielding improved patient outcomes [ 40 ]. By unravelling the intricacies of PMP pathophysiology, researchers can identify novel therapeutic targets and develop interventions that specifically target disease-driving pathways, thus potentially offering new avenues for therapeutic intervention and enhancing patient prognoses.…”

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“…For MCI, while there is compelling evidence that a range of interventions can be offered [6,7], these are rarely provided in clinical practice [5]. In contrast to other countries such as Austria, Korea, Spain, Sweden, and the United States of America [8], there has been a lack of Australian data on the quality of care and there have not been coordinated efforts to systematically monitor the quality of care with a view to improving and standardizing service provision at a national level. Finally, in comparison to other international exemplars, such as the United Kingdom Memory Services National Accreditation Programme (MSNAP) [9], Australian dementia services have lacked a clinical community for peer support, clinical care professional development, service enhancements and for statewide or national service and health system advocacy.…”