Project: Multi-centre cohort-studies in Lewy-body dementia: Challenges in harmonizing different clinical and biomarker protocols
There is a striking lack of large longitudinal cohort studies focusing on dementia with Lewy bodies (DLB), now established as the most common neurodegenerative dementia after Alzheimer’s disease and accounting for 10-15% of all dementia cases. Small, single-centre studies indicate high health-related costs, short time to nursing home admission, reduced quality of life and high mortality. Recruitment of sufficient numbers of DLB patients for meaningful observational or intervention trials has not yet
been achieved because of the diverse clinical profile of these patients who present to psychiatry, neurology, memory, sleep, and geriatric medicine clinics. Clear guidelines about appropriate assessment tools and outcome measures, and also suitable trial designs also need to be agreed. Finally, little is known about the earliest changes in DLB, and there is an urgent need to address the early, prodromal stages of DLB, particularly important to facilitate preventative approaches. The overall aims of this project therefore are to a) Identify available longitudinal DLB cohorts and develop methods for data pooling b) Provide overall guidelines and detailed protocol recommendations for future prospective cohort studies in DLB, including biomarker procedures and clinical scales with sound psychometric properties and sensitive to change c) Develop strategies for defining and identifying prodromal DLB. The work-plan includes convening an expert workgroup, and organising a workshop, which will identify available DLB cohorts and how these can be involved in the current
work. The workgroup will discuss strategies for how to address the aims listed above, and identify sub-groups addressing the specific objectives as outlined below. The reports from subgroups will be distributed to the full membership in a final workshop and a consensus statement will be delivered by the end of the 6-month project period. In addition to submitting the guidelines and recommendations to the JPND, these will also be reported in a review paper, to be submitted for publication in a relevant peer-reviewed scientific journal. Another key output will be to contribute to the planning process of the 5th International DLB Consortium meeting, together with US colleagues.
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