Understanding Quality of Life in ALS Patients at TidalHealth
This study at TidalHealth aims to understand how physical abilities and other factors affect the quality of life for people living with Amyotrophic Lateral Sclerosis (ALS), also known as Motor Neuron Disease. Researchers will use two questionnaires: the Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised (ALSFRS-R) to measure physical function, and the Amyotrophic Lateral Sclerosis Assessment Questionnaire-40 (ALSAQ-40) to measure quality of life. The goal is to identify what most impacts a patient's daily life, which could help improve care. You may be able to join if you are over 18, have an ALS diagnosis, and receive care at the TidalHealth Peninsula Regional Multidisciplinary ALS Clinic. The study plans to enroll 30 participants, but its current status is unclear.
- Study design
- This is an observational study, meaning researchers will collect information over time without giving any new treatments. It plans to include 30 participants.
- What's involved
- You would complete questionnaires at your initial visit and then at every other standard-of-care clinic visit for up to two years.
- Compensation
- Not stated in the trial record.
- Follow-up
- Your quality of life will be assessed for up to two years, and your physical functioning will be assessed for up to two years.
AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.
Impact of Physical Functioning on Patient-Reported Outcomes in ALS Patients at TidalHealth
At a glance
Conditions
NCT07491484
Where you'd take part
This study runs at 1 site. They're the same protocol — you choose where, and that choice sets who your contact draft is addressed to.
TidalHealth Peninsula Regional, Inc.
Salisbury, Marylandstudy coordinator listed
Recruiting
Sites open and close at different times, so the status above is per site — it can differ from the study's overall status.
Who to contact
Opens a ready-to-send draft in your own email app — review before sending.
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Inclusion
Exclusion
What this trial measures
- Results of the Amyotrophic Lateral Sclerosis Assessment Questionnaire (ALSAQ-40)Assessment will start at the initial visit, then every other standard-of-care clinic visit, through study completion (assessed up to 2 years).
Participants report a response related to their overall health condition during the past two weeks; all answers are given on a five-point Likert Scale. Where 0 indicates best health status and 4 indicates worst.
- Results of the Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised (ALSFRS-R)Assessment will start at the initial visit, then every standard-of-care clinic visit, through study completion (assessed up to 2 years).
Participants report a response related to their functional status; all answers are given on a four-point Likert Scale. Where 0 indicates maximum disability and 4 indicates normal function.