ALL ALS Research

Access for ALL in ALS

Funded by the National Institutes of Health (NIH), the Access for ALL in ALS Consortium (ALL ALS), is a community of two coordination centers and 35 research sites across the United States, conducting a combined longitudinal natural history study and biomarker collection study for ALS.

ALL ALS research engages with people currently living with ALS, potential ALS gene carriers, and family members, friends, and community partners to better understand all stages of ALS disease progression.

ALL ALS STUDIES BY THE NUMBERS

Total Number of Active Sites

Total Participants Enrolled

Fully Remote Participants Enrolled

Number of Blood Sample vials*

Number of CSF Sample vials*

* The number of vials collected per visit and sample volumes are dependent on sample type and can vary between visits. Not all participants are providing CSF samples.

ALL ALS STUDIES

ALL ALS is leading the charge in ALS research with two groundbreaking studies.

Important Update: The PREVENT study, which enrolled 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 has closed, as of September 30, 2026. Note: Enrollment for the ASSESS study, which enrolls people living with ALS and people living without ALS (and not at genetic risk) is open for enrollment.

ASSESS ALL ALS

Enrolling people living with an ALS diagnosis or people living without ALS with no known family history of ALS and/or FTD.

ASSESS ALL ALS Study

We work to remove barriers through new technology allowing for remote participation and collecting data from individuals with ALS and control participants. 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.

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PREVENT ALL ALS

Enrollment Closed - Enrolled people with increased genetic risk of developing ALS and/or FTD.

PREVENT ALL ALS Study

These research efforts recruit potential asymptomatic ALS gene carriers, and are working 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.

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Join Our Study

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.

Why was the ALL ALS consortium created?

The Accelerating Access to Critical Therapies for ALS Act (ACT for ALS), which was signed into law in the United States on December 23, 2021, established an HHS, public-private partnership (PPP) for rare neurodegenerative diseases. One component of this PPP is an Accelerating Medicines Partnership® for ALS (AMP® ALS).The ALL ALS Consortium was created as part of this initiative to move forward ALS research.