AI-assisted ALS Clinical Trial Finder: Helping Patients and Caregivers Explore Latest Research Opportunities

ALS, or amyotrophic lateral sclerosis, is a progressive neurodegenerative disease that affects nerve cells controlling voluntary muscle movement. Each year, more than 5,000 people in the United States are diagnosed, and around 30,000 people are living with the condition. Despite advances in research, ALS remains a devastating diagnosis, with average life expectancy after onset typically between two and five years.

This urgency has made clinical research not only a cornerstone of scientific progress but also a source of hope. However, for many in the ALS community, finding and enrolling in the right trial is often harder than it should be. We are honored to support the ALS network help the ALS community reach relevant clinical trial opportunities faster via our AI-based clinical trial finder.

The Challenge of Finding Clinical Trials

Research shows that fewer than 10% of people living with ALS ultimately participate in clinical trials, even though interest is much higher. Several barriers help explain this gap:

• Eligibility criteria: Trial protocols often include strict requirements based on respiratory function, biomarkers, or disease stage. One study estimated that nearly 60% of people with ALS are excluded from trials at diagnosis due to eligibility rules alone.
  
• Complex language. Trial descriptions are frequently written in highly technical terms, making it difficult for patients and families to determine whether a study is relevant. Research has found that the medical terminology in many trial listings is a barrier to understanding and discourages participation.
  
• Geographic access. Most ALS trials are located at major academic centers, which can be hours away for many patients. Studies have shown that distance from a research site reduces the likelihood of enrollment, especially as mobility becomes more limited.
  
• Timeliness of information. In some cases, a trial listed as “recruiting” has already stopped enrolling participants. This mismatch between listing and reality can delay decision-making during a period when time is especially important.

How the ALS Clinical Trial Finder Supports the Community

The ALS Network has partnered with TrialX to launch its first AI-based Clinical Trial Finder, a centralized platform that helps patients and caregivers find up-to-date, relevant information about clinical trials. Key Features of the ALS Clinical Trial Finder include:

1. Guided Search:

A step-by-step guide walks through what clinical trials are, what participating involves, and what to expect. Users can type in their location and basic health information to get personalized trial matches that are relevant.

2. Self-Directed Search:

This option allows independent searching using filters such as location, keywords, trial type, phase, and remote participation. Users can type or select their preferences to find trials that best fit their situation.

3. Clear Trial Summaries & Prescreening: 

Each trial listing includes accessible summaries with the study’s objectives, eligibility requirements, and what participation may entail. Prescreening tools allow users to quickly determine potential eligibility, and direct contact options via email or phone connect participants with study teams efficiently.

4. Volunteer Registry:

Patients can sign up for the ALS volunteer registry to receive notifications about new trials. By providing basic information, they stay updated without having to check listings repeatedly, helping ensure they don’t miss upcoming opportunities.

Ongoing Opportunities in ALS Clinical Trials 

Recent advancements in ALS research are paving the way for more inclusive and accessible studies. For example, the PREVENT ALL ALS Study focuses on individuals genetically at risk for ALS, aiming to identify early biomarkers and understand disease progression. This study offers both in-person and remote participation options, making it accessible to a broader range of participants. 

Similarly, the ASSESS ALL ALS Study collects clinical data from individuals with ALS and healthy controls, using technology to facilitate remote participation. This approach reduces barriers to participation and enhances inclusivity in ALS research.

These initiatives reflect the ongoing efforts to make ALS research more approachable and accessible. Learn more about other recruiting clinical trials through the ALS Clinical Trial Finder to explore available opportunities.