How Learning a Lewy Body Disease Biomarker Result Affects People Emotionally and Behaviorally
Studies how people respond to learning their Lewy body disease biomarker test result.
Plain-language title generated from the registry record
Registry title: Alpha-synuclein Education and Disclosure in Individuals With Preclinical and Symptomatic Lewy Body Disease
Key facts
- Where
- Stanford, United StatesSee the site
Could this be for you?
Answer for yourself. This is not a decision: only the study team can say whether you can take part.
- Are you between 40 and 85 years old?
Source: NCT07646652, who can take part
Where in United States
- Stanford UniversityStanford, United StatesNo longer taking part
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Trial details
- Who runs it
- Stanford University
- Trial code
- NCT07646652
- Record updated
- 15 June 2026
- Original description
The goal of the study is to assess if learning one's Lewy Body Dementia (LBD) biomarker test result impacts longitudinal psychosocial and behavioral responses and to identify factors that moderate and mediate these outcomes.Read full original descriptionShow less
Alpha-synuclein Education and Disclosure in Individuals With Preclinical and Symptomatic Lewy Body Disease
The goal of the study is to assess if learning one's Lewy Body Dementia (LBD) biomarker test result impacts longitudinal psychosocial and behavioral responses and to identify factors that moderate and mediate these outcomes.
Inclusion: All Participants; Able to provide 1) written, informed consent or 2) assent if a care partner can provide consent; Access to a primary care or neurology provider for ongoing care; 1) willing to undergo skin biopsy or lumbar puncture for alpha-synuclein testing or 2) has access to as-yet undisclosed skin biopsy or lumbar puncture alpha-synuclein testing results; Healthy/Asymptomatic Arm; Undergoing testing for defined reason (e.g., research study); Mini-Mental State Examination score between 26 and 30 (or MoCA between 25 and 30); General good health (no diseases expected to interfere with the study); Symptomatic Arm [Concern for dementia with Lewy bodies (DLB), Parkinson's disease (PD), or multiple system atrophy (MSA)]; Referred by a neurologist or movement disorder specialist; Adults with any of the following: symptomatic LBD, mild cognitive impairment with Lewy body (MCI-LB), Parkinson's disease dementia (PDD), MCI in Parkinson's disease (PD-MCI), or criteria for multiple system atrophy (MSA).
Exclusion: Concurrent enrollment in a trial with conflicting disclosure protocols; Healthy/Asymptomatic Arm • Neurological diagnosis at the time of biomarker assessment (e.g., Alzheimer's disease, Parkinson's disease, normal pressure hydrocephalus, brain tumor, progressive supranuclear palsy, seizure disorder, subdural hematoma, etc.); Symptomatic Arm; All Participants; Clinician judgment that disclosure poses unacceptable psychological risk; Absence of a caregiver who can complete assessments.