LBDA

Harvard LBD Biomarker Study (Boston, MA)

People with LBD (including dementia with Lewy bodies and Parkinson’s disease dementia) experience life-altering changes in their cognitive abilities. This affects the quality of life for both the person with LBD and their family caregiver. Biomarkers (biological tests) are needed to help speed the development of new therapies for LBD.

What is this study about?

The aim of this study is to develop a test that can detect a problem in the body’s ability to regulate a type of fat (also called a lipid) in nerve cell membranes. This specific lipid is called a sphingolipid; people with a variation in the β-glucocerebrosidase gene (GBA), which is a known risk factor for LBD, do not regulate this lipid normally. A test for a ‘bad sphingolipid’ may be helpful in more rapidly developing treatments for LBD.

What is involved?

This is an observational study in which participants will have four clinical visits over two years. At every visit, participants will undergo clinical assessments and provide blood samples.  Once a year, participants and will be asked to donate a cerebrospinal fluid sample via lumbar puncture.

Who can participate?

An individual may be able to take part in the study if he/she:

  • Is at least 21 years old
  • Is diagnosed with dementia with Lewy bodies (DLB) or Parkinson’s disease with memory problems or dementia
  • Has the ability to agree to enter the study
  • Has a care partner who can attend all study visits

Healthy adults are also needed for a comparison group.

Study Sponsor

National Institutes of Health

For more information

Contact: Ana Trisini Lipsanopoulos at atrisini@bwh.harvard.edu  or (857) 307-5424