Exploring the world of ALS clinical trials can be daunting for people with the disease and their caregivers. Online information sources, like clinicaltrials.gov, can be difficult to navigate, overly technical, and sometimes incomplete or not up to date. It can be challenging to understand what trials you are eligible or ineligible for.

Informed by her personal experiences supporting individuals with ALS and navigating clinical trials alongside her late husband, Sundeep, ALS TDI’s Director of Community Outreach and Engagement, Dr. Nadia Sethi, embarked on a mission to develop a platform that simplifies the process and genuinely guides individuals on their journey.

What is the ALS Trial Navigator?

Developed with invaluable input based on lived experience from the ALS community, the ALS Trial Navigator is a comprehensive resource that will provide people impacted by ALS with a suite of tools to help demystify ALS clinical trials and personalize the search process. These tools include:

  • Guided Trial Finder: The ALS Trial Navigator Platform features the Guided Trial Finder as an innovative tool which allows people with ALS to access a personalized list of trials based on their eligibility and preference
    • Users will be guided step-by-step through a questionnaire, inputting information about their disease – like their genetics, time from symptom onset, and other test results.
    • They will also be able to indicate personal preferences, such as how far they are willing to travel from their home to a trial site.
    • As they work their way through the questionnaire, they will also find answers to common questions and definitions of important terms for understanding the clinical trial landscape.
      Based on these answers, users will be provided with a list of trials for which they may be eligible and that meet their preferences. They can then use this information to contact sponsors to inquire about screening for trials and discuss their options with their care team.

  • ALS Trial Map: Trial Map will provide users with a way to explore the locations of ALS trial sites all over the world, allowing them to search for trials based on their preferred location. The development of this tool would not have been possible without the contributions of our collaborators Pat Dolan, who is living with ALS, and the team at ESRI.
  • Trial Browser: Trial Browser will provide a searchable list of active trials globally. Users will be able to manually filter this list by criteria such as placebo ratio, genetics, country, and much more. This tool could be most useful for people who already have a good idea of what they’re looking for in a trial, or ALS researchers and advocates looking to better understand the current trial landscape.

What are the goals of the ALS Trial Navigator?

ALS Trial Navigator provides individuals affected by ALS and those at genetic risk with valuable information on research opportunities,” says Dr. Nadia Sethi, ALS TDI’s Director of Community Engagement, who oversaw the tool’s design and creation. “Participating in trials is one of the most impactful ways that the community can accelerate ALS research – clinical trials are a critical component on the path to new treatments for this disease and observational studies could help understand more about the biology of ALS or improve quality of life. ALS Trial Navigator benefits all within the ALS community – it helps people living with ALS, those that might face it in the future, and researchers looking to enroll trials to advance ALS research.”

However, the goals of the ALS Trial Navigator go beyond providing information about trials. Through the Guided Trial Finder, it also aims to educate people with ALS about what questions they should be asking when considering participation.

“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. Sethi. 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.”

How was the ALS community involved in designing this tool?

To make sure the ALS Trial Navigator best met the needs of all people with ALS, ALS TDI consulted advisors from the ALS community every step of the way. A panel of people living with ALS, caregivers, and people with ALS-related genetic mutations reviewed the design and accessibility of the tools throughout its development. Their invaluable insights also directly informed the content of the Guided Trial Finder questionnaire. Additionally, the Trial Map Tool was created in partnership with Pat Dolan, the creator of the ALS Geospatial Hub, who is living with the disease.

“We’re proud of that and grateful to everyone that has helped us in shaping ALS Trial Navigator,” says Dr. Sethi. “There have been many advocates and families that have poured hours into the ALS Trial Navigator.  Our plan is to continue to lean on the community for their feedback so that this tool can continue to evolve to best fit the needs of people living with ALS and those that may be at risk for genetic ALS.”

How can I access the ALS Trial Navigator?

The ALS Trial Navigator launched as a beta test in February, 2024. During these initial months, users are encouraged to provide feedback about how  the tools could be improved as we work to make the platform as useful as possible to the ALS Community.

To begin your search for ALS clinical trials, click here: https://www.als.net/news/als-trial-navigator/ 

For more updates about the ALS Trial Navigator, subscribe to ALS TDI’s mailing list and follow us on FacebookTwitter, and Instagram.

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