WATCH-PD Qualitative Study: A Mental Model of Coping with Disease Progression
Objective: To qualitatively evaluate how individuals’ adjust to and cope with symptoms of Parkinson’s disease (PD). Background: The WATCH-PD qualitative study is evaluating meaningful symptoms…Experiencing Life with Tourette Syndrome: The Invisible Effects of Tics
Objective: To evaluate how individuals with Tourette Syndrome experience stigma. Background: Persistent Tic Disorders (PTD), including Tourette Syndrome (TS), are neurodevelopmental disabilities characterized by multiple…Patient and Caregiver Experiences with Huntington Disease: Emotions, Challenges, and Unmet Needs in the Patient Journey
Objective: To describe patients' emotional journey from symptom onset and diagnosis to current state and to identify challenges and unmet needs in Huntington disease (HD).…Combining MDS-UPDRS Parts 1 and 2: using the patient’s voice
Objective: To test whether the patient-derived MDS-UPDRS Parts assessing non-motor (Part 1) and motor (Part 2) functional impact of PD can be summed to render…Experiences of a personalised intervention to support self-management in PwP – PD-Care: Live Well with Parkinson’s
Objective: 1) Evaluate acceptability and feasibility of the intervention2) Understand barriers and enablers to engagement and intervention improvement recommendations Background: We co-designed the ‘Live Well…The development of an electronic motor symptoms diary for Parkinson’s disease using qualitative patient insights
Objective: To develop an electronic version of the Hauser diary, commonly used in clinical trials to assess motor fluctuations and dyskinesia in patients with Parkinson’s…Evaluation of Functional Impairment and Treatment Satisfaction in Patients With Essential Tremor: a Cross-Sectional Study of Physicians Using Real-World Data
Objective: To describe the impact of tremor on activities of daily living (ADL) and treatment satisfaction in patients with essential tremor (ET). Background: ET, a…Participant-reported personal utility of genetic testing for Parkinson’s disease and interest in clinical trial participation
Objective: To investigate whether participants in the PD GENEration study (NCT04994015) perceived personal benefit from receiving genetic testing for Parkinson’s disease (PD), whether being tested…The AIMS Clinic Model: A Retrospective Analysis of Interdisciplinary Neuropalliative Care for People with Advanced Parkinsonism
Objective: To describe and evaluate the Advanced Interdisciplinary Movement Disorders Supportive Care (AIMS) Clinic, a novel interdisciplinary clinic for patients with advanced movement disorders. Background:…Gathering Prodromal Participant Perspective on Receiving Personal Research Information
Objective: To understand perceptions and expectations of people with prodromal Parkinson’s disease (PD) around receiving personal research information. Background: There is limited information on the…
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