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.
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.
Undergoing testing for defined reason (e.g., research study)
Clinician judgment that disclosure poses unacceptable psychological risk.
Concurrent enrollment in a trial with conflicting disclosure protocols.
Participants who have preclinical (early stage) or symptomatic Lewy Bodies Dementia.
Cohort
Prospective
LBD Biomarker Education and Disclosure
Other interventionIn-depth interviews as well as questionnaires will be conducted with individuals who have preclinical (early stage) or symptomatic LBD.
Change in distress scale score as measured by the Impact of Event Scale-Revised
Distress related to biomarker disclosure will be assessed via the validated Impact of Event Scale-Revised (IES-R, a 22 item self-report measure). Scores range from 0 to 88; higher scores mean greater distress.
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This trial is not recruiting at the moment. You can still explore other options:
