Background: Minor phenomena, including passage phenomena, feeling of presence, and illusions, are common and may represent a prodromal form of psychosis in Parkinson's disease (PD). We examined the prevalence and clinical correlates of minor phenomena, and their potential role as a risk factor for PD psychosis.
Methods: A novel questionnaire, the Psychosis and Mild Perceptual Disturbances Questionnaire for PD (PMPDQ), was completed by Fox Insight cohort participants with and without PD.
Int J Environ Res Public Health
February 2023
Little is known about the effects of parental depression on offspring as they transition to adulthood-a challenging time developmentally, when late adolescents must separate from home, achieve intimate relationships, and develop a sense of identity. We present long-term quantitative and qualitative data from early adolescents with a depressed parent who were randomized to one of two family-based preventive interventions and followed over time, across the transition to young adulthood. Specifically, we present clinical measures of psychopathology and Likert-scale questionnaire data from young adults and their parents regarding the transition to adulthood and perceptions of the interventions.
View Article and Find Full Text PDFParkinson's disease (PD) is the fastest-growing neurological disease in the world. A key challenge in PD is tracking disease severity, progression, and medication response. Existing methods are semisubjective and require visiting the clinic.
View Article and Find Full Text PDFBackground And Objectives: To recruit and characterize a national cohort of individuals who have a genetic variant ( G2019S) that increases risk of Parkinson disease (PD), assess participant satisfaction with a decentralized, remote research model, and evaluate interest in future clinical trials.
Methods: In partnership with 23andMe, Inc., a personal genetics company, G2019S carriers with and without PD were recruited to participate in an ongoing 36-month decentralized, remote natural history study.
Background: Traditional in-person Parkinson's disease (PD) research studies are often slow to recruit and place unnecessary burden on participants. The ongoing COVID-19 pandemic has added new impetus to the development of new research models.
Objective: To compare recruitment processes and outcomes of three remote decentralized observational PD studies with video visits.
Introduction: Parkinson's disease (PD) research is hampered by slow, inefficient recruitment and burdensome in-person assessments that may be challenging to conduct in a world affected by COVID-19. Fox Insight is an ongoing prospective clinical research study that enables individuals to participate in clinical research from their own homes by completing online questionnaires. To date, over 45,000 participants with and without PD have enrolled.
View Article and Find Full Text PDFCurr Neurol Neurosci Rep
March 2021
Purpose Of Review: Digital technology affords the opportunity to provide objective, frequent, and sensitive assessment of disease outside of the clinic environment. This article reviews recent literature on the application of digital technology in movement disorders, with a focus on Parkinson's disease (PD) and Huntington's disease.
Recent Findings: Recent research has demonstrated the ability for digital technology to discriminate between individuals with and without PD, identify those at high risk for PD, quantify specific motor features, predict clinical events in PD, inform clinical management, and generate novel insights.
Objective: The expanding power and accessibility of personal technology provide an opportunity to reduce burdens and costs of traditional clinical site-centric therapeutic trials in Parkinson's disease and generate novel insights. The value of this approach has never been more evident than during the current COVID-19 pandemic. We sought to (1) establish and implement the infrastructure for longitudinal, virtual follow-up of clinical trial participants, (2) compare changes in smartphone-based assessments, online patient-reported outcomes, and remote expert assessments, and (3) explore novel digital markers of Parkinson's disease disability and progression.
View Article and Find Full Text PDFBackground: The rise of direct-to-consumer genetic testing has enabled many to learn of their possible increased risk for rare diseases, some of which may be suitable for gene-targeted therapies. However, recruiting a large and representative population for rare diseases or genetically defined sub-populations of common diseases is slow, difficult, and expensive.
Objective: To assess the feasibility of recruiting and retaining a cohort of individuals who carry a genetic mutation linked to Parkinson's disease (G2019S variant of LRRK2); to characterize this cohort relative to the characteristics of traditional, in-person studies; and to evaluate this model's ability to create an engaged study cohort interested in future clinical trials of gene-directed therapies.
Purpose Of Review: The prevalence of neurodegenerative diseases, such as Alzheimer's disease (AD) and Parkinson's disease (PD), is rising as the global population ages. Access to specialist care, which improves outcomes, is insufficient and disease-related disability makes in-person physician visits burdensome. Telehealth is one potential means for improving access to care.
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