Characterizing the Patient Clinical Journey Before and After Diagnosis of Friedreich Ataxia and Differences by Age at Diagnosis
Objective: To characterize the patient journey through clinical specialties involved in the intermediate-to-late age at diagnosis of adult patients with Friedreich ataxia (FA) based on…Developing an Electronic Medical Record-Based Dystonia Tracking Tool for use in a Pediatric Hospital Setting
Objective: To develop an electronic medical record (EMR) tool for documenting and tracking dystonia severity in pediatric inpatients. Our goal was to enable easy input…Disease Monitoring through the PKAN Disease Rating Scale (PKAN-DRS) in Pantothenate Kinase-Associated Neurodegeneration (PKAN)
Objective: To assess the utility of PKAN-DRS as an outcome measure for monitoring disease progression in PKAN . Background: The PKAN-DRS assess multiple domains affected…Study Of Epidemiological and Clinical Profile of Neurologic Wilson’s Disease from a Tertiary Care Hospital In India
Objective: To study the epidemiological profile of neurologic Wilson’s disease (WD) and to study clinical, biochemical and radiological features of neurologic WD Background: Wilson’s disease…Quantitative evaluation of speech characteristics in Assessment of Motor Speech for Dysarthria (AMSD) using acoustic analysis
Objective: This study aims to extract acoustic features from speech data obtained from patients undergoing the Assessment of Motor Speech for Dysarthria (AMSD), a clinical…Empathy in Action A Sensory Experience for Healthcare Providers
Objective: Evaluate the impact of a multisensory, hands-on experience designed to simulate the motor and non-motor symptoms of Parkinson’s disease (PD) on healthcare providers’ (HCPs)…Effects of an Intensive Multidisciplinary Rehabilitation Program on Patients with Spinocerebellar Ataxia
Objective: To evaluate the effectiveness of an intensive multidisciplinary rehabilitation program in patients with spinocerebellar ataxia. Background: Spinocerebellar ataxias (SCAs) cause significant motor impairment, affecting…Digital balance and gait measures show promise to track progression of Friedreich’s ataxia
Objective: This study aimed to identify balance and gait measures sensitive to disease progression in a multicenter clinical trial of Friedreich Ataxia (FRDA). Background: The…Correlation of the FXTAS Staging System and the FXTAS Rating Scale
Objective: To determine correlation between the Fragile X-associated tremor ataxia syndrome (FXTAS) staging system and the FXTAS rating scale Background: FXTAS is an X-linked, neurodegenerative…A mindfulness-based intervention course in pre-manifest Huntington’s disease: analysis of pilot data
Objective: To assess feasibility and initial outcomes of a mindfulness-based intervention course in patients with pre-manifest, genetically confirmed Huntington’s disease (HD). Background: Mindfulness-based intervention courses…
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