Recruitment for Remote Decentralized Studies in Parkinson's Disease.

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.

Use of Figurative Language by People With Parkinson Disease to Describe "Off" Periods: Clear as Mud.

Objective: "Off" periods are characterized by the reemergence of motor and nonmotor symptoms in individuals with Parkinson disease (PD) and often negatively affect daily functioning. Individuals' experiences are diverse and may be difficult to articulate; figurative language is often used by patients to describe such experiences. Our objective was to understand how individuals with PD use figurative language to explain off periods and how experts interpret such expressions.

The Experience of OFF Periods in Parkinson's Disease: Descriptions, Triggers, and Alleviating Factors.

Purpose: Wearing off of Parkinson's disease medication is common, but triggers and coping strategies for this transient phenomenon are poorly understood. We aimed to assess the lived experience of OFF periods for people with Parkinson's disease.

Methods: Participants in the longitudinal Fox Insight study who endorsed OFF periods were invited to complete a survey consisting of both multiple-choice and free-text responses.

Video-based Parkinson's disease assessments in a nationwide cohort of Fox Insight participants.

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.

The experience of care partners of patients with Parkinson's disease psychosis.

Background: Parkinson's disease psychosis (PDP) has a major impact on quality of life and care partner burden; however, little is known about the lived experiences of care partners in managing PDP.

Objective: To understand how care partners of individuals with PDP experience their role and articulate their needs related to psychosis.

Methods: This was a qualitative study of semi-structured telephone interviews.

Knowledge, Responsibilities, and Peer Advice From Care Partners of Patients With Parkinson Disease Psychosis.

Care partners (CPs) of individuals with Parkinson disease psychosis (PDP) experience increased strain and rely on informal support networks. The objective of this study was to characterize CP responsibilities, sources of support, and peer advice. This was a mixed-methods cross-sectional study.

Limb and trunk accelerometer data collected with wearable sensors from subjects with Parkinson's disease.

Parkinson's disease (PD) is a neurodegenerative disorder characterized by motor and non-motor symptoms. Dyskinesia and motor fluctuations are complications of PD medications. An objective measure of on/off time with/without dyskinesia has been sought for some time because it would facilitate the titration of medications.

Accelerometer data collected with a minimum set of wearable sensors from subjects with Parkinson's disease.

Parkinson's disease (PD) is a neurodegenerative disorder associated with motor and non-motor symptoms. Current treatments primarily focus on managing motor symptom severity such as tremor, bradykinesia, and rigidity. However, as the disease progresses, treatment side-effects can emerge such as on/off periods and dyskinesia.

Triggers and alleviating factors for fatigue in Parkinson's disease.

Background: Fatigue is common in Parkinson's Disease, but few effective treatments are available for it. Exploring triggers and alleviating factors, including effects of exercise, could inform development of management strategies for Parkinson's Disease fatigue.

Objectives: To examine triggers and alleviating factors for fatigue reported by individuals with Parkinson's Disease, including perceived effect of exercise.

Design of a virtual longitudinal observational study in Parkinson's disease (AT-HOME PD).

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.

Understanding the Lexicon of Fatigue in Parkinson's Disease.

Background: Fatigue in Parkinson's disease (PD) is multifaceted and associated with reduced quality of life. In turn, the language used by people with PD to describe fatigue is variable and poorly understood. We sought to elucidate the lexicon of fatigue using a qualitative grounded theory approach.

The Most Bothersome Aspects of Periods Reported by Individuals with Parkinson's Disease.

Introduction: The periods in Parkinson's disease have a significantly negative impact on quality of life. What the most bothersome aspects of periods are from the patient's perspective are not well studied, nor is the degree to which screening tools for wearing off such as the Wearing Off Questionnaires (WOQs) capture what bothers patients most.

Methods: A questionnaire was deployed to eligible participants of Fox Insight, an online study of individuals with self-reported Parkinson's disease.

Fox Insight collects online, longitudinal patient-reported outcomes and genetic data on Parkinson's disease.

Fox Insight is an online, longitudinal health study of people with and without Parkinson's disease with targeted enrollment set to at least 125,000 individuals. Fox Insight data is a rich data set facilitating discovery, validation, and reproducibility in Parkinson's disease research. The dataset is generated through routine longitudinal assessments (health and medical questionnaires evaluated at regular cycles), one-time questionnaires about environmental exposure and healthcare preferences, and genetic data collection.

Feasibility and utility of a clinician dashboard from wearable and mobile application Parkinson's disease data.

Mobile and wearable device-captured data have the potential to inform Parkinson's disease (PD) care. The objective of the Clinician Input Study was to assess the feasibility and clinical utility of data obtained using a mobile health technology from PD patients. In this observational, exploratory study, PD participants wore a smartwatch and used the mobile phone app to stream movement data and report symptom severity and medication intake for 6 months.

Wearable sensors for Parkinson's disease: which data are worth collecting for training symptom detection models.

Machine learning algorithms that use data streams captured from soft wearable sensors have the potential to automatically detect PD symptoms and inform clinicians about the progression of disease. However, these algorithms must be trained with annotated data from clinical experts who can recognize symptoms, and collecting such data are costly. Understanding how many sensors and how much labeled data are required is key to successfully deploying these models outside of the clinic.

Impact of motor fluctuations on real-life gait in Parkinson's patients.

Background: People with PD (PWP) have an increased risk of becoming inactive. Wearable sensors can provide insights into daily physical activity and walking patterns.

Research Questions: (1) Is the severity of motor fluctuations associated with sensor-derived average daily walking quantity? (2) Is the severity of motor fluctuations associated with the amount of change in sensor-derived walking quantity after levodopa intake?

Methods: 304 Dutch PWP from the Parkinson@Home study were included.

Feasibility of large-scale deployment of multiple wearable sensors in Parkinson's disease.

Wearable devices can capture objective day-to-day data about Parkinson's Disease (PD). This study aims to assess the feasibility of implementing wearable technology to collect data from multiple sensors during the daily lives of PD patients. The Parkinson@home study is an observational, two-cohort (North America, NAM; The Netherlands, NL) study.

The ethics of unilateral implantable cardioverter defibrillators and cardiac resynchronization therapy with defibrillator deactivation: patient perspectives.

Aims: Decisions about deactivation of implantable cardioverter defibrillators (ICDs) are complicated. Unilateral do-not-resuscitate (DNR) orders (against patient/family wishes) have been ethically justified in cases of medical futility. Unilateral deactivation of ICDs may be seen as a logical extension of a unilateral DNR order.

Defibrillator Deactivation against a Patient's Wishes: Perspectives of Electrophysiology Practitioners.

Background: Unilateral do-not-resuscitate (DNR) orders (against patient/family wishes) have been ethically justified in cases of medical futility. We investigated whether electrophysiology practitioners believe medical futility justifies unilateral implantable cardioverter defibrillator (ICD) deactivation.

Methods And Results: Email invitations to take an online survey were sent to 1,894 electrophysiology practitioners.