Studies how physical ability relates to quality of life in ALS
Observes how daily physical function relates to quality of life in people with ALS.
Plain-language title generated from the registry record
Registry title: Impact of Physical Functioning on Patient-Reported Outcomes in ALS Patients at TidalHealth
Key facts
- Where
- Salisbury, United StatesSee the site
Where in United States
- TidalHealth Peninsula Regional, Inc.Salisbury, United StatesTaking people
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Trial details
- Who runs it
- TidalHealth, Inc.
- Trial code
- NCT07491484
- Record updated
- 24 March 2026
- Original description
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.Read full original descriptionShow less
The Impact of Physical Functioning on Self-Reported Measures of Quality of Life in the ALS Patient Population at TidalHealth Peninsula Regional
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.
Inclusion: Over the age of 18; Have a diagnosis of Amyotrophic Lateral Sclerosis of Motor Neuron Disease; Able to comprehend and willing to sign an informed consent form and comply with study procedures; Receiving care at TidalHealth Peninsula Regional Multidisciplinary ALS Clinic.
Exclusion: Unwilling or unable to comply with the study procedure, including the presence of any condition that is likely to affect the participant's ability to comply with study procedures; Unable to read and understand English.