How physical functioning relates to quality of life for people with ALS at TidalHealth
The Impact of Physical Functioning on Self-Reported Measures of Quality of Life in the ALS Patient Population at TidalHealth Peninsula Regional
TidalHealth · NCT07491484
This study will see if physical functioning scores relate to quality of life for adults with ALS who receive care at TidalHealth Peninsula Regional.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 30 (estimated) |
| Ages | 18 Years and up |
| Sex | All |
| Sponsor | TidalHealth (unknown) |
| Locations | 1 site (Salisbury, Maryland) |
| Trial ID | NCT07491484 on ClinicalTrials.gov |
What this trial studies
This is a prospective longitudinal observational study of adults with ALS treated at the TidalHealth Peninsula Regional multidisciplinary ALS clinic. Participants will complete the ALS Functional Rating Scale–Revised (ALSFRS-R) and the ALS Assessment Questionnaire-40 (ALSAQ-40) at repeated visits to track physical function and patient-reported quality of life over time. The study will analyze correlations between ALSFRS-R scores and ALSAQ-40 scores and explore whether cognitive or behavioral changes add independent effects on quality of life. Data are intended to inform clinical decisions that could help target supportive interventions to preserve or improve daily functioning and well-being.
Who should consider this trial
Good fit: Adults (age 18 or older) diagnosed with ALS who receive care at the TidalHealth Peninsula Regional ALS clinic, can read English, and can give informed consent are eligible.
Not a fit: People who are not treated at TidalHealth, cannot read English, or are unable to complete questionnaires or comply with study procedures are unlikely to receive direct benefit from participating.
Why it matters
Potential benefit: If successful, the results could help clinicians identify which aspects of functioning most strongly affect quality of life so they can prioritize interventions that improve patients' daily lives.
How similar studies have performed: Previous observational research has often found that declining physical function correlates with worse quality of life in ALS, while the contribution of cognitive and behavioral changes is less well defined.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: * 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 Criteria: * Unable to read and understand English * 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.
Where this trial is running
Salisbury, Maryland
- TidalHealth Peninsula Regional, Inc. — Salisbury, Maryland, United States (RECRUITING)
Study contacts
- Study coordinator: Allison D Elerding, MS
- Email: Allison.Elerding@tidalhealth.org
- Phone: 410-912-6122
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.
Conditions: Amyotrophic Lateral Sclerosis, Motor Neuron Disease, Quality of Life, ALSAQ-40, ALSFRS-R, Physical Functioning, Patient Reported Outcomes, PRO