NCT06820008
Measurement and Impact of Physical Impairment in Amyotrophic Lateral Sclerosis: Use of Digital Technologies - A Precision ALS Project
Recruiting · Not specified · University of Dublin, Trinity College · registry updated 2025-02-11
Inclusion and exclusion lines below are quoted from ClinicalTrials.gov. No match score is shown, because a score needs a person's age, biomarkers, and treatment dates. Confirm the record with the study team.
Amyotrophic Lateral Sclerosis (ALS), the most common form of Motor Neuron Disease (MND), is a neurodegenerative disease. At present there are limited treatment options for this disease which progressively affects physical function, i.e., the ability to speak, breathe, walk, and perform activities of daily living. ALS is a rare disease, and can present differently amongst individuals, therefore global collaboration is vital to have enough participants in studies to evaluate the effects of new treatments more precisely. There are now many novel technologies that measure physical function which could be used in research studies to allow people with ALS to participate, in-part from home, knowing that they have access to the best clinical trials but with minimal time and travel burden. Their accuracy and the ability/willingness of people with ALS to use them need to be evaluated before they are accepted. One of the traditional measurements used in research is called the ALS Functional Rating Scale -revised (ALSFRS-r) but this measurement has been criticised for being unable to pick up small changes and, in the digital age, outdated....
Inclusion
- Diagnosis of ALS made by a Neurologist; possible, lab-supported probable, probable or definite as per the revised El Escorial Criteria.
- Enrolled in the Precision ALS prospective study.
- Ability to understand participation requirements and provide informed consent to undergo assessments and for data to be used.
- Willingness to use a smartphone or tablet and to download and use study apps.
- Age \>18 years
- Home access to a stable broadband internet connection and willingness to use this for data collection.
Exclusion
- Diagnosis of a neurological disease other than ALS, active dementia or psychiatric illness that would limit ability to follow the assessment schedule of the study.
- Other medical condition that would compromise the patient's safety or limit their participation in this study.