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The ALS Gene Carrier Study 

Asymptomatic person with a known ALS Gene

Families Fight Together
A Family-Centered Approach to ALS & FTD Research

We are enrolling individuals and families affected by ALS or FTD,  including people living with the disease, asymptomatic individuals, genetic carriers, and family members who want to help.
 

By participating, families help contribute meaningful data before symptoms appear, support prevention research, accelerate early detection, strengthen future prevention trials, and build the evidence needed for better treatments. This is how families move research forward — together.

 

Participation is fully remote. Individuals or families share simple health data from home using digital tools that track speech, movement, and long-term changes over time. There’s no blood tests to begin, and no genetic testing required to join. 

 

Whether you’re living with ALS, are an asymptomatic gene carrier, or are a family member who wants to help, join now. Grab your family and submit our interest form below. Together, we can turn data into prevention.

Who Can Join:
This study welcomes everyone,
both individuals and families who are:

Living with ALS 

Pre‑symptomatic individuals (with or without genetic testing)

Individuals with a two or more incidents of ALS or FTD in family 

Unaffected family members and friends

as control participants

Anyone that is 18+ years old residing in the United States

I am interested to participate in Required

More Info click here

Are you enrolled in PREVENT ALS Study (DIALS) or ALS Families Study?
Do you use Assistive Devices ?

Leveraging advanced Artificial Intelligence technologies, we aim to measure and analyze ALS motor functions.

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Access your secured

data, anytime!

Study Procedure:

  • Wear limb sensors that record motor function data

  • Perform digital memory and thinking tests

  • Record speech and facial movement data

  • Sessions are conducted in the comfort of your home

This study is conducted

in partnership with

Massachusetts General

Hospital and Harvard Medical School with a generous support from ALS Finding a Cure.

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