Publications by authors named "Micheala Johnson"
People with motor neuron disease often experience non-motor symptoms that may occur secondary to, or distinct from, motor degeneration and that may significantly reduce quality of life, despite being under-recognized and evaluated in clinical practice. Non-motor symptoms explored in this population-based study include pain, fatigue, gastrointestinal issues, poor sleep, low mood, anxiety, problematic saliva, apathy, emotional lability, cognitive complaints and sexual dysfunction. People registered on the Clinical Audit Research and Evaluation of motor neuron disease platform, the Scottish Motor Neuron Disease Register, were invited to complete a questionnaire on non-motor symptoms and a self-reported Amyotrophic Lateral Sclerosis Functional Rating Scale.
View Article and Find Full Text PDFArticle Synopsis
- Motor neuron disease (MND) is a fast-progressing neurodegenerative disorder with few treatment options, and the MND-SMART trial aims to find effective drugs while addressing issues with recruitment and retention in clinical trials.
- The study involved 120 MND participants who completed questionnaires, revealing that while 78% were interested in the trial, only 50% were randomized into MND-SMART, with a 65% retention rate after one year.
- Findings indicate that older participants were significantly less likely to engage in the trial, highlighting the need to better understand the characteristics of participants to improve future recruitment strategies.
Background: We investigated the phenotypes and genotypes of a cohort of 'long-surviving' individuals with motor neuron disease (MND) to identify potential targets for prognostication.
Methods: Patients were recruited via the Clinical Audit Research and Evaluation for MND (CARE-MND) platform, which hosts the Scottish MND Register. Long survival was defined as > 8 years from diagnosis.