ALS is not yet curable, and disease-modifying treatments are limited in effectiveness. Researchers are actively seeking what causes ALS, and what if any biomarkers exist to detect it. Individuals with confirmed cases of ALS are of particular interest to these researchers, especially those whose disease progression is limited.
Each research study or clinical trial will have its own specific qualification criteria. It is common for ALS research to require a formal diagnosis from a qualified physician, and a relatively high ALSFRS-R score, which implies a limited level of disease progression.
Individuals interested in participating in research studies or clinical trials should apply promptly after a diagnosis to ensure that they meet the participation requirements of the study.
Research studies are typically limited to those living in a certain geographic region, such as the same country that the study is being conducted in.
The commitment required for participating in clinical trials can vary significantly, and it is important for potential participants to assess whether they can realistically meet these requirements.
Frequency of Visits: Some trials may require frequent in-person visits for procedures, tests, or monitoring. For those living near the trial site, this may be manageable, but for those in remote areas, it can be a burden.
Types of Procedures: Some trials involve invasive procedures, such as biopsies or blood draws, which might be uncomfortable.
Duration of Participation: Some trials might involve a long-term commitment.
Symptom Monitoring: Participants may be required to regularly report symptoms or side effects.
Health and Well-being: Some trials might involve treatments or procedures that could cause discomfort or side effects.
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The Centers for Disease Control and Prevention (CDC) maintains a patient registry for U.S. citizens diagnosed with Amyotrophic Lateral Sclerosis (ALS). This registry is utilized for research purposes and participation in it is voluntary.
This ALS patient registry is available to United States citizens only.