Planning Workshop on Clinico-pathological Correlations in the Lewy Body Dementias Participant List
Report on the Clinico-Pathological Correlations in the Lewy Body Dementias: Planning Workshop
Georgetown Suites, Washington, D.C.
September 20-21, 2004
The attendees engaged in a lively discussion of the genetic, neuropathological, and clinical features of Dementia with Lewy Bodies (DLB), Parkinson's disease plus dementia (PDD) and their overlap with Alzheimer's disease (AD). The group strove to identify the key features of DLB/PDD so that prospective studies could be conducted across centers and that a uniform minimum data set could be collected. The urgency of this move to include the assessment of DLB/PDD is the recognition that
- well more than 35% of PD patients are destined to become demented
- 60% of AD cases show LB changes, and
- 5-10% of all dementia cases are pure DLB.
Questions identified included the following:
- little or no information is available on the "mild cognitive impairment" (MCI) equivalent of DLB.
- Should DLB cases be excluded or included in AD trials? Should they be included in PDD trials?
- Are there any potential markers, imaging or otherwise for DLB?
- What are the best tools for assessing DLB?
Many questions were raised and the group developed a series of recommendations and identified individuals who would be willing to take the recommendations one step further.
- To date there are no published consensus neuropathologic criteria for a diagnosis of DLB. ACTION: Dr. Ian McKeith of the Newcastle group is in the process of writing up the outcome of a consensus conference he organized in Newcastle and was encouraged to go forward with this, consulting members of the group where needed.
- Promote a series of working groups to propose hypothesis-driven studies of:
- Visuospatial assessment in dementia (Cummings, Stern, Salmon, McKeith)
- Assessment of fluctuations in dementia
- Choice reaction time (McKeith, Stern, Salmon)
- Sleep assessment for the minimal data set (Boeve)
- Assessment of autonomic function (Gilman)
- Develop best practices for the neuropathological workup of DLB, PD, PDD through the Udall Centers and Alzheimer's Centers (Dickson), including biochemistry (Trojanowski).
- Collect family histories and blood samples on patients with affected first degree relatives (Hardy and Singleton)
- Harmonize genetic studies of LB diseases funded by NACC and NINDS (Montine, Tsuang) in ADCs with similar efforts in Udall Centers to develop synergistic research program. Sharing of samples was emphasized.
- Treatment should not be ignored and a program to test compounds that target AD in DLB, PDD, etc. should be considered (Cummings, McKeith)
- Biomarkers should also be pursued such as neuroimaging, sleep (Gilman and Boeve), CSF, plasma and urine (Trojanowski)
The individuals associated with each point expressed some interest in pursuing such studies.