Objective: To investigate the epidemiology and phenomenology of PSP and CBS within the province of Leinster.

Background: PSP and CBS are uncommon parkinsonian disorders. Studies of the epidemiology of these conditions are limited, and to date few have used the most recent diagnostic criteria (Hoglinger 2017 and Armstrong 2013). There is a need to improve our understanding of the epidemiology of PSP and CBS. Up-to-date epidemiological data using current diagnostic formulations are necessary to plan for future service provision.

Method: The Leinster Tauopathy Study is a prospective study of PSP and CBS began recruitment in September 2022. Referrals are sought from multiple sources for participants with a diagnosis or suspected diagnosis of PSP or CBS with an address in  the province of Leinster (population 2.8 million). Participants recruited to the study undergo a clinical assessment and phenotyping including assessment of cognitive and neuropsychological symptoms using a battery of standardised tests.

Results: To date, the study has recruited 36 participants (21 men and 15 women). 28 patients had PSP and 6 with CBS and 2 with PSP/CBS overlap syndromes. Mean time from symptom onset to ascertainment was 6.6 years.

Conclusion: The Leinster Tauopathy Study represents an opportunity to improve our understanding of PSP and CBS in Ireland. To date study procedures have been well tolerated and there is significant interest on the part of physicians, people with PSP/CBS, and their families.

References: Funding for this research was provided by the Meath Foundation, in the form of a Fellowship provided to Shane Lyons.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/the-prevalence-of-primary-tauopathies-in-ireland-a-clinically-defined-study-in-the-province-of-leinster-design-and-initial-data/