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.
There are two major types of research studies:
Interventional, whereby the patient receives treatment such as a disease-modifying drug or some other type of therapy.
Observational, whereby the patient is observed during the course of their disease. A patient registry would be an example of an observational study, as the researchers may compare patients of different ages, or some other criteria.
Each research study or clinical trial will have its own specific qualification criteria. It is common for ALS trials to require a formal diagnosis from a qualified physician, and a relatively high ALSFRS-R score, which implies a limited level of disease progression.
Those who are interested in participating in clinical trials should apply promptly to ensure that they meet the participation requirements of the study.
Trials 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.
ClinicalTrials.gov is an online database of past and present clinical trials run by the United States government. It lists trials that are taking place all over the world.
Click the button below to search for ALS and MND trials.
The Centers for Disease Control and Prevention (CDC) maintains a patient registry for U.S. citizens diagnosed with ALS. This registry is utilized for research purposes and participation in it is voluntary.