A Comprehensive Exploration of the Quality of Life and Caregiver Burden in Multiple System Atrophy
Objective: To evaluate the impact of MSA disease on QoL and caregiver burden and identify influencing factors of QoL in a large UK-based cohort Background:…Developing a Framework for Huntington’s Disease Care Partner Training and Support – HD Care Partner Bootcamp Series
Objective: In this protocol we present a novel collaborative framework for a Huntington’s Disease (HD) Care Partner (CP) bootcamp series designed to train and support…Breaking Away From the Ivory Tower
Objective: We describe the evolution of the Geriatric Flying Squad (GFS), a rapid response outreach team for residential aged care facilities (RACFs) in the local…Using Zebrafish Model to Investigate Complex Hereditary Spastic Paraplegia Caused by EPT1 Variants
Objective: To generate disease-representative zebrafish models using CRISPR-Cas9 technique.To characterise the zebrafish models by performing phenotypic characterization, neurobiological experiments, lipidomic and RNASeq studies.To test targeted…International Mentorship in PPMI Clinical Translation (IMPaCT): Engagement Initiatives for Clinical Participants in the United States (US)
Objective: Describe cohort engagement strategies conducted by PPMI IMPaCT Program among US participants. Background: Retention in longitudinal studies is vital for study for data integrity/analysis.1…Yes, Palliative Care in Advanced Parkinsonism pays off: a pilot Cost-effectiveness Analysis
Objective: To evaluate the cost-effectiveness of a specialized multidisciplinary team approach (ACT-PD) compared to standard care (SC) in those living with advanced parkinsonian syndromes (APS),…Understanding the Challenges of Treating and Living with Essential Tremor: Results from a Lived-Experience Focus Group
Objective: To understand the experience of living with essential tremor (ET), we ran a lived-experience focus group that examined impact of tremor of daily life,…Awareness and Implementation of Advanced Care Planning in Patients with Neurodegenerative Diseases
Objective: This study aims to evaluate the awareness and implementation of advanced care planning (ACP) in patients with neurodegenerative diseases in Japan. Background: Although ACP…Spinocerebellar Ataxia Recessive Type 7 (SCAR7) in a Consanguineous Family: A Case Report
Objective: Spinocerebellar ataxia autosomal recessive type 7 (SCAR7) is a rare disorder caused by biallelic pathogenic variants in TPP1. It usually manifests in childhood or…Vision in Motion: Eye Exercises to Enhance Balance in Parkinson’s Disease – A Randomized Controlled Trial
Objective: 1. Primary Objective: Confirm the effectiveness of innovative eye exercises in improving balance over a 12-week intervention period.2. Secondary Objectives: Evaluate reductions in…
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