ALL ALS Consortium | ALS Research | ALS Disease Progression

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

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.

The ALL ALS PREVENT study focuses on understanding the earliest stages of the disease in people at risk, while the ASSESS ALL ALS study collects vital data on individuals living with ALS to track disease progression and identify new biomarkers.

PREVENT ALL ALS

Research into the natural history of ALS, including its earliest manifestations in asymptomatic ALS gene carriers, is a top priority.

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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ASSESS ALL ALS

Our aim is to make research inclusive and accessible to all, not just those who can visit academic medical centers.

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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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.

ALS patient in a wheelchair with a caretaker

African American couple preparing a meal in their kitchen

Scientist looking at a slide under a microscope

What is ALL ALS?

Funded by the NIH/NINDS, the Access for ALL in ALS Consortium (ALL ALS), is a community of two coordination centers and 34 research sites across the United States, conducting a combined longitudinal natural history study and biomarker collection study for ALS. This study will include both people currently living with ALS, and asymptomatic ALS gene carriers.

ALL ALS PRESS

Stay informed about the latest breakthroughs and developments in ALS research by exploring our press releases and news section.

Access for ALL in ALS: A large-scale, inclusive, collaborative consortium to unlock the molecular and genetic mechanisms of amyotrophic lateral sclerosis

Recent progress in therapeutics for amyotrophic lateral sclerosis (ALS) has spurred development and imbued the field of ALS with hope for more breakthroughs, yet substantial scientific gaps persist. This unmet need remains a stark reminder that innovative paradigms are needed to invigorate ALS research. To move toward more informative, targeted, and personalized drug development, the National Institutes of Health (NIH) established a national ALS clinical research consortium called Access for ALL in ALS (ALL ALS).

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First Participant Enrolled in NIH-Funded Access for All in ALS Consortium

The Access for All in ALS Consortium (ALL ALS) announced the successful enrollment of the first participant.

Established in the autumn of 2023 with funding from the National Institutes of Health (NIH), ALL ALS is a multi-institutional effort, and aims to disrupt the ALS clinical research landscape using open science methods to build broadly accessible resources to advance ALS research. The consortium brings together research scientists from across the country, combining their efforts to collect clinical and biomarker data from people with ALS symptoms, asymptomatic individuals at risk of developing inherited forms of ALS, and control participants. The ALL ALS clinical and genomic data and biofluid collections will help researchers investigate the antecedents of ALS, its onset, progression, prognostication, and response to effective therapies.

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National Institutes of Health (NIH) funds New Multi-Institutional ALS Clinical Research Consortium

ALS is a complex neurodegenerative disease, but the causes remain poorly understood and there are few effective therapies available. There is an urgent need for large-scale, collaborative efforts to identify useful biofluid biomarkers that can guide researchers about its onset, progression, and response to effective therapies.

To achieve these goals, the NIH has established a transformative national ALS clinical research consortium called Access for All in ALS (ALL ALS). This new consortium is a multi-institutional effort and aims to disrupt the ALS clinical research landscape in the U.S. It will operationalize recommendations of the Accelerating Access to Critical Therapies for ALS Act (ACT for ALS) Public Private Partnership. This grant is made possible by the Accelerating Access to Critical Therapies for ALS Act, which was signed into law in December 2021.

NEED ADDITIONAL INFORMATION?

Contact us if you have any questions or need additional information on the ALL ALS study.

Funding:

The ALL ALS Consortium and all related studies are funded by the National Institutes of Health (NIH), Grant # 1OT2NS136938 and 1OT2NS136939.