Approximately 5% of all dementia patients present with Dementia with Lewy Bodies (DLB), affecting a total of 2% of the general population above 65 years of age. Additionally, approximately 30% of Parkinson disease (PD) patients present with dementia symptoms more than one year later after PD diagnosis (PD with dementia, PDD). Together these phenotypes are called Lewy Body Dementias (LBD), and are often referred to as AD related dementia as they show overlap with both Alzheimer disease (AD) and PD on a clinical, pathological and genetic level.
Very limited information is known on underlying biological processes explaining these diseases. Genetic analyses in case-control cohorts and large families with a family history for disease have been instrumental in understanding biological processes for many other diseases. Results from these kind of studies will translate into better diagnoses and eventual treatments for a broader community of people.
So far, however, genetic research in LBD has been very limited and mostly focused on analyses in non-Hispanic white cohorts. To prevent health disparities, the John P. Hussman Institute for Human Genomics (HIHG) research study of LBD is committed to reach out to patients of all population groups. This way, results of our research study will give us insight in disease across all population groups and will also lead to outcomes relatable to all patients.
The HIHG team led by Drs. Nuytemans, Pericak-Vance and Vance are committed to extend the LBD research beyond the overlap with AD and PD and into diverse populations to identify novel variants and understand genetic contributions to LBD across populations.
For more information, or to participate in our Lewy Body dementia study, please contact us at:
Phone: 1-877-686-6444
Email: LBD- HIHG@miami.edu
Note on COVID-19
Lewy Body Dementias are not taking a break and neither are we. We continue to find a solution that will help those affected by the disease. In response to COVID-19, we have converted our research study to allow for participation for those interested without putting anyone at-risk. We have halted in-person visits for now. We will complete as much of the recruitment as possible via telecommunication/over-the-phone questionnaires. We will resume in-person study activities (requirement of sample to be used for testing of genetic biomarkers) as soon as it is safe to do so. Please find phone numbers and resources on our home page if you have any questions about COVID-19. Thank you and stay safe!