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DLB Consortium

This study aims to establish a research network and registry for persons with Dementia with Lewy Bodies (DLB) in order to characterize the disease and aid in future clinical trials.

Age & Gender

  • 40 years ~ 90 years
  • Male, Female

Visit Availability

  • Standard business hours (M-F, 8-5)
  • Visits can be combined with regular clinical appointments


North Carolina (Statewide)

What will be asked of you

At each visit you and your study partner will fill out questionnaires about your condition. You will also undergo a blood draw, neurological assessment, and cognitive testing. At each annual visit you will undergo a lumbar puncture. You will have brain imaging including MRI and DaTscan at the baseline and 24 month visits. You must also agree to donate your brain to research if you were to pass away during the course of the study.


$50-$250 per visit / up to total $1,350 for 7 visits, Costs of all study procedures are covered by the sponsor. Depending on the distance you live from the research site, you may be eligible to have certain parts of your travel expenses reimbursed.

In-person visits : 7
Total length of participation : 5 years

Looking for Specific Volunteers

Able to participate:

  • Probable DLB, "High-likelihood" DLB with MCI, or PDD
  • MoCA of 8 or above
  • At least 8 years of education and able to communicate in English
  • Subject lives with or has substantial periods of contact with a caregiver who is willing to attend study visits and report on subject's status

Not eligible if:

  • Presence of structural neurological disease (stroke, head trauma, tumor, or other disorder)
  • Presence of devices or objects contraindicated for MRI
  • Pregnant, breast-feeding, or planning to become pregnant during the course of the study
  • Currently enrolled in the placebo-controlled phase of an investigational drug trial

Contact the Team

Visit Location

100% Remote (online, phone, text)

Additional Study Information

Principal Investigator

Daniel Kaufer

Study Type

Clinical or Medical

Study Topics

Brain, Head, Nervous System
Mental and Emotional Health

IRB Number


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