ALL ALS is working to build a dataset to be used for ALS research! Whether you are a person living with ALS, caregiver, family member, friend, or someone who would just like to contribute to our research, there is a place for you to get involved.
Important Update:
The PREVENT ALL ALS study, which enrolls people at increased genetic risk of developing ALS, has exceeded their enrollment goals, due to the overwhelming support of the at risk community! As a result, enrollment in PREVENT will be closing on September 30, 2026. Note: Enrollment for the ASSESS ALL ALS study, which enrolls people living with ALS and people living without ALS (and not at genetic risk), will continue to enroll past Sept. 30, 2026.
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Yes, ASSESS is still enrolling people living with ALS and people living without ALS (controls). View the ALL ALS study site map below to find a site near you or participate remotely, if you are living with ALS.
Our aim is to make research accessible to all, not just those who can visit academic medical centers. Not only we will we remove barriers through new technology allowing for remote participation, this study will set the new standard for how we learn about ALS, and we cannot do that without understanding your unique experience of ALS.
By studying data from a wide spectrum of people, we can learn more about ALS and make future clinical trials better and more accessible.
Who can participate?
The study includes 1600 ALS patients (Cohort 1) and 450 control participants (Cohort 2).
Cohort 2- Must not have ALS or be known to be at risk of carrying a causative ALS gene mutation.
This may include spouses of ALS participants, family members of people with known ALS mutations who have tested negative for the family ALS causative gene mutation and other ALS gene mutations, and members of the general US population and others encountered at ALL ALS Sites.
You may not qualify to participate if you experience the following:
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Enrollment in PREVENT has closed because the study reached (and exceeded) its enrollment goals. We are grateful to the at-risk community and our PREVENT participants for their continued support and generous commitment to advancing ALS research.
Research into the natural history of ALS, including its earliest manifestations in asymptomatic ALS gene carriers, is a top priority. These research efforts are expected to result in knowledge that can lead to more informative, targeted, and personalized drug development, taking the field one step closer toward the goal of halting, repairing, and/or preventing ALS.
PREVENT enrolled adults (18 years of age or older) who met specific eligibility criteria, including:
Enrollment in PREVENT has closed; however, participants currently enrolled continue to complete scheduled study visits and follow-up assessments.
Participants complete:
Funded by the NIH/NINDS, the Access for ALL in ALS Consortium (ALL ALS), is a community of two coordination centers and 37 research sites across the United States, conducting a combined longitudinal natural history study and biomarker collection study for ALS.