Enrolling in a clinical trial or other type of research study can be a daunting undertaking for people living with ALS and their caregivers. Online information sources, like clinicaltrials.gov, can be difficult to navigate, overly technical, and sometimes incomplete or outdated. It can be challenging to understand what studies you are eligible or ineligible for, and even what kind of study aligns with your goals and needs.

Recently, two organizations serving the ALS community have developed tools to help people with ALS navigate clinical trials. The Les Turner ALS Foundation’s My Decision Tool and the ALS Therapy Development Institute (ALS TDI)’s ALS Trial Navigator offer people with ALS critical support in approaching clinical research.

  • The My Decision Tool helps people with ALS and their caregivers navigate the choice of whether to participate in a clinical trial or observational study and helps them learn more about their various options.
  • The ALS Trial Navigator provides a comprehensive database of ALS trials and helps users find studies that match their preferences and eligibility.

Both tools are useful on their own—but together, they provide support for a broad range of choices and questions involved in enrolling in an ALS study. 

Les Turner My Decision Tool

The Les Turner Foundation’s My Decision Tool is an online, interactive informed decision tool, created to help people with ALS and their families navigate the many complicated choices that go along with the disease. The tool provides a series of modules, featuring information from subject matter experts and people with lived experience. Each one walks users through the many factors that go into making these decisions. The available modules include:

“One thing that’s really important to us is health literacy,” says Anne Marie Doyle, the Les Turner ALS Foundation’s Director of Community Education. “So, we created educational tools surrounding these complex medical issues. We use plain language to make the information more digestible for everyone. Then we provide information about the potential benefits or drawbacks in each case.”

As users move through each module, they are presented with background information about each subject. Then, they learn about the options available to them in each case, and what important variables they may want to weigh before making a decision. The tool launched in 2021 with modules about breathing and nutrition support—walking people through choices like using noninvasive ventilation or getting a feeding tube.

Regarding clinical research, Anne says that the team behind the My ALS Decision Tool realized there was a particularly important need for more digestible information.

“When we initially got the feedback that people were looking for information on clinical research, we did a survey of the information that was available online,” she says. “One thing that became apparent was that a lot of the information regarding ALS clinical research was written at a higher level, using a lot of technical jargon, and was really lengthy. We found that there was a gap in providing information on clinical research that could be addressed using the principles of health literacy.”

With this in mind, the Participating in Clinical Research module of the My ALS Decision Tool was launched in 2024, covering topics including:

  • Different types of studies, including clinical trials, observational studies, expanded access programs, and end-of-life-tissue donations.
  • The potential benefits, risks, and challenges associated with participating in clinical research.
  • What to expect before, during, and after participating in a study.
  • Other important questions to ask to be an informed research participant, such as:
    • What is the potential time commitment?
    • Are there monetary issues with the associated costs of participation?
    • Are you willing to travel to participate in a study?

After working their way through this (or any of the other modules), users can save and print out the answers to any questions they’ve answered—making them easy to bring to an appointment at their ALS clinic to discuss with their care team.

ALS TDI’s ALS Trial Navigator

Around the same time that the Les Turner ALS Foundation introduced this module, ALS TDI launched another powerful tool for learning more about participating in clinical research: the ALS Trial Navigator.

Developed with invaluable input based on lived experience from the ALS community, the ALS Trial Navigator houses a comprehensive database of global ALS clinical trials and observational studies and helps to personalize the search process. It includes a suite of tools for connecting people with ALS, their caregivers, and asymptomatic gene carriers with trials they could potentially enroll in. These include:

  • Guided Trial Finder: A tool that walks users through a questionnaire to determine their preferences and potential eligibility for clinical trials. After answering a series of questions about their needs, concerns, and disease history, they are provided with a customized list of studies that meet their criteria.
  • ALS Trial Map: An interactive map that lets users locate trials with sites near them, anywhere in the world.
  • Trial Browser: A searchable list of available ALS trials and studies, featuring a variety of filtering options.

“There’s a lot to think about when trying to decide whether to be in a trial or in understanding what other types of studies are available,” says Dr. Nadia Sethi, who oversaw the creation of this tool as ALS TDI’s former Director of Community Outreach and Engagement. “When interacting with your care team, it’s hard to know what to ask about research, there is often limited time in appointments, and ALS research is full of terminology that can be intimidating. With the information in this tool, people can start thinking about the aspects of research studies that might matter most to them and generate a list of trials that might be a fit for them so that they can have an informed discussion with their clinicians.”

Using the My ALS Decision Tool and Trial Navigator Together

While both these tools are useful on their own, together they have the potential to support people considering enrolling in research throughout much of what can be an intimidating and difficult process. The My ALS Decision Tool can provide help with much of the early decision-making and research. Then, with a better idea of what kind of study they might be looking for, the Trial Navigator can help users understand their potential eligibility and find studies that meet their criteria.

“I think these tools build off each other very well,” says Anne. “I think you would use the My ALS Decision Tool to initially get a better idea of: ‘What is clinical research?’ and ‘Is this something that I'm interested in?’ It’s a great way to provide some educational information and test the waters. Then, I see people moving on to the Trial Navigator to get started with questions like ‘What type of research would I qualify for?’ ‘What's currently enrolling?’ ‘Where can I learn more about participating in those studies? That's how I see people using the tools together.”

If you’re considering participating in ALS clinical research, start your journey with the Les Turner ALS Foundation’s My ALS Decision Tool.

Then, begin your search for the right study for you with ALS TDI’s ALS Trial Navigator.

What to Do Next: