RecruitingNCT07491484

Impact of Physical Functioning on Patient-Reported Outcomes in ALS Patients at TidalHealth

The Impact of Physical Functioning on Self-Reported Measures of Quality of Life in the ALS Patient Population at TidalHealth Peninsula Regional


Sponsor

TidalHealth, Inc.

Enrollment

30 participants

Start Date

Jul 3, 2025

Study Type

OBSERVATIONAL

Conditions

Summary

Amyotrophic Lateral Sclerosis (ALS) is a fatal neurodegenerative disease in which motor neuron cells of the brain and spinal cord progressively degenerate and die. There is currently a lack of curative treatment for individuals that are diagnosed with ALS. Since treatment options are limited, researchers have placed greater emphasis on evaluating Quality-of-Life (QoL) as it offers perspective into the everyday life of the patient and is sensitive to changes over time. The goal of this longitudinal observational study is to learn more about what factors negatively impact an individual's QoL after they are diagnosed with ALS. Previous research has shown that an individual's level of physical functioning can negatively impact their quality of life, but this may not be the only factor. The main objectives this study are: 1. Assess if there is a statistically significant correlation between patient's functionality scores (ALSFRS-R) and quality of life scores (ALSAQ-40). 2. Determine how disease stage (King's Clinical Severity Staging System) affects correlation between functionality scores (ALSFRS-R) and quality of life scores (ALSAQ-40). Participants will complete a quality-of-life questionnaire (ALSAQ-40) every other time they present to their standard-of-care clinic visits for a period of two years. In parallel, with the functionality rating (ALSFRS-R) scores captured as standard-of-care at every clinic visit.


Eligibility

Min Age: 18 Years

Plain Language Summary

Simplified for easier understanding

This clinical trial is studying Amyotrophic Lateral Sclerosis Assessment Questionnaire-40 and Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised for people with amyotrophic lateral sclerosis and motor neuron disease. The study is currently recruiting participants at 1 location.

This summary was AI-generated to explain the trial in plain language. It is not medical advice. Always discuss eligibility with your doctor before enrolling in a clinical trial.

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Interventions

OTHERAmyotrophic Lateral Sclerosis Functional Rating Scale-Revised

Patient-Reported Functionality Assessment

OTHERAmyotrophic Lateral Sclerosis Assessment Questionnaire-40

Patient-Reported Quality-of-Life Assessment


Locations(1)

TidalHealth Peninsula Regional, Inc.

Salisbury, Maryland, United States

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NCT07491484


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