Watertown, MA, February 29, 2024 –Navigating the landscape of ALS clinical trials can be daunting for individuals with the disease and their caregivers. Recognizing this challenge, ALS Therapy Development Institute (ALS TDI) is proud to introduce the ALS Trial Navigator, a groundbreaking platform designed to demystify ALS clinical trials and personalize the search process.

Driven by personal experiences supporting individuals with ALS and navigating clinical trials alongside her late husband, ALS TDI’s Director of Community Outreach and Engagement, Dr. Nadia Sethi, embarked on a mission to develop the ALS Trial Navigator.

“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.”

What is the ALS Trial Navigator?
The ALS Trial Navigator is a comprehensive resource that provides people impacted by ALS with a suite of tools to simplify their journey through ALS clinical trials. This includes:

Guided Trial Finder: An innovative tool that allows individuals with ALS to access personalized trial recommendations based on their eligibility and preferences.
ALS Trial Map: A feature allowing users to explore ALS trial locations worldwide.
Trial Browser: A searchable list of active trials globally, with customizable filters.

In addition to helping people find trials, the ALS Trial Navigator provides information and resources along the way to educate users about clinical trials and common terminology.

Goals of the ALS Trial Navigator
Dr. Sethi emphasizes, “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.”

Involvement of the ALS Community
To ensure the ALS Trial Navigator meets the diverse needs of the ALS community, ALS TDI collaborated closely with individuals living with ALS, caregivers, and advocates throughout the development process. Their insights directly informed the platform’s design and content.

“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.”