LBD: Develop biomarkers to detect disease prior to symptom onset (Milestone 9.J)
In Progress
Timeline Start - End
2016 - 2027Research Implementation Area
BiomarkersAD-Related Dementias Focus
Expand existing and develop new longitudinal LBD study cohorts, including diverse populations, from pre-symptomatic disease to autopsy to support diagnostic, epidemiologic, and therapeutic studies.
Success Criteria
- Increase the number of people enrolled in research cohorts that investigate LBD from pre-symptomatic LBD through autopsy. This research will be powered to answer key questions in at least 2 populations that experience health disparities.
- Create and apply criteria to ensure that longitudinal LBD cohort studies collect and share de-identified, standardized data.
Summary of Key Accomplishments
In 2020, NIH-funded investigators helped lead an international consensus effort to define research criteria for diagnosing prodromal dementia with Lewy bodies (DLB), which will help to advance standardization of early LBD biomarkers. For example, several funded awards are evaluating a biomarker test that uses a simple skin biopsy to detect abnormal LBD-associated alpha-synuclein clumps in individuals with LBD and with prodromal LBD.
NIA and NINDS jointly funded the North American Prodromal Synucleinopathy Consortium for REM Sleep Behavior Disorder which is collecting longitudinal clinical, neuroimaging and biospecimen data on over 300 individuals with REM sleep behavior disorder, an important prodromal risk factor for the development of LBD.
The Parkinson's Disease Biomarkers Program (PDBP) and the National Alzheimer's Coordinating Center (NACC) continue to enroll individuals with LBD using a similar standard clinical assessment protocol designed specifically for this group that over 50 participating sites are required to use; all data is shared with interested researchers.
The key accomplishments summary is current as of July 2022.
Accomplishments/Implementation Activities
Funding Initiatives
- RFA-NS-17-016: Leveraging Existing Resources for Research on Lewy Body Dementia (R03)
- PAR-18-661: Pathway and Target Identification for Alzheimer's Disease Related Dementias (ADRDs)
- PAR-19-170: Progression Markers for Cognitive Impairment in Parkinson's Disease Dementia (R01)
- RFA-NS-19-014: Center without Walls for PET Ligand Development for Alzheimer's disease related dementias (ADRDs) (U19)
- NOT-NS-21-001: Administrative Supplements for Connecting Pre-mortem Clinical Information with Post-Mortem Brain Analysis
- RFA-NS-22-055: Functional Target Validation for Alzheimer's Disease-Related Dementias (ADRDs) (R61/R33 Clinical Trial Not Allowed)
Research Programs and Resources
- Pathway and Target Identification for Alzheimer's Disease Related Dementias (ADRDs)
- Progression Markers for Cognitive Impairment in Parkinson's Disease Dementia (R01)
- NINDS Parkinson’s Disease Biomarkers Program (PDBP)
- NIH NeuroBioBank
- NINDS BioSEND
- NINDS Human Cell and Data Repository (NHCDR)
- Select projects funded in FY21
- Select projects funded in FY22
Relevant Recommendations
- 2016 ADRD Summit: Lewy Body Dementias (LBD) Focus Area 1: Establish Longitudinal Diverse Cohorts with Common Measures, Culminating in Autopsy, Recommendation 2
- 2022 ADRD Summit: Lew Body Dementias (LBD) Milestone 4, Priority 4