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  • Celebrate ALS Awareness Month!

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.

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ALL ALS STUDIES BY THE NUMBERS

Total Number of Active Sites
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Total Participants Enrolled
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Fully Remote Participants Enrolled
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Number of Blood Sample vials*
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Number of CSF Sample vials*
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* 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.

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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.

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ALL ALS PRESS

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

ALS patient in red vest outdoors near a pond

Frequently Asked Questions About ALL ALS

For ALS Awareness Month, let’s explore some of the most frequently asked questions about ALL ALS:

1. What is the ALL ALS Consortium?

The ALL ALS Consortium is a nationwide clinical research initiative launched in the fall of 2023 and designed to advance ALS understandings and research.

ALL ALS grew from a partnership between NIH, biotech companies, ALS researchers and people living with ALS.  It is funded through the NIH by the 2021 ACT for ALS law. 

2. ALL ALS is an observational study. What does that mean, and why is it important?

An observational study means that no new treatment is being tested. These projects are critical to finding new treatments and advancing medicine. Observational research focuses on collecting information and samples, like blood, to understand the course of ALS, identify new drug targets, and discover biomarkers (tests that can help diagnose the disease).

3. What are biomarkers, and how do they help with research?

Biomarkers are measurable signs of a disease like blood tests. In ALS research, biomarkers help scientists understand the body’s response to the disease and can be useful for diagnosis, measuring ALS progression, and identifying treatment response. 

4. Can you enroll in an observational study and an interventional trial at the same time?

Generally, people can participate in both observational studies, like ALL ALS, and interventional clinical trials at the same time. In fact, ALL ALS is designed specifically to allow people to participate in both ALL ALS and treatment trials at the same time. If you are currently enrolled or would like to enroll in an interventional trial and are interested in participating in an observational study, talk to the related study teams.

5. What is cerebrospinal fluid, and why is ALL ALS requesting participants donate it?

Cerebrospinal fluid (sometimes called “CSF” or just “spinal fluid”) surrounds the brain and spinal cord. Our bodies make more of it every day, and it is safe to collect CSF for analysis. This is frequently done in neurological care and research. The proteins and other substances contained within the CSF may provide the earliest signs of disease and often hold detailed information about neurological diseases.

The procedure to collect spinal fluid is called a spinal tap or lumbar puncture. This procedure is done in the clinic, and it is routine, safe, and well-tolerated. Though some people can develop a headache after the procedure, extensive work is done to minimize the risk. ALL ALS participants have the option to participate in a lumbar puncture.

6. Where are the ALL ALS data and samples stored, and how are they shared?

All study data is stored in secure databases and samples are stored in a central repository. Data and samples, which are separated from participants’ personal health information, like name and address, will be shared only with scientific researchers using legal agreements to protect confidentiality. Only information necessary for specific analyses is shared.

7. There are so many organizations involved in ALS research! How is ALL ALS collaborating with others?

The ALL ALS leadership team has built collaborations with as many organizations as possible, including the ALS Association, ALS United, I AM ALS, ALS Therapy Development Institute, NEALS, the ALS Hope Foundation, and the CDC. New collaborations are being forged every day!

8. Is ALL ALS collaborating with any other research studies?

ALL ALS is collaborating with other research studies, including Target ALS, the ALS Natural History Study, the CDC National ALS Registry, and ALL FTD. ALL ALS is committed to sharing data with all researchers to reduce redundancy and ensure maximum impact of all the data and samples collected.

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ALS Awareness Month Banner, purple background with the traditional purple ribbon icon for ALS

It’s May! Welcome to ALS Awareness Month!

In 1992, May was officially declared ALS Awareness Month to recognize and honor the ALS community, including people living with ALS and their family, friends, and caregivers.

ALS (Amyotrophic Lateral Sclerosis) is also known as Lou Gehrig’s disease to some. It is a neurodegenerative disease that attacks the motor nerve cells responsible for movement, causing progressive weakness. Thanks to dedicated research over the years, we now have 3 medications to slow progression and many to help with symptoms. Research continues to be conducted to identify more effective therapies.

ALL ALS is a research study that collects information and samples (blood and sometimes spinal fluid) from people living with ALS and those who carry a gene that might cause the disease to facilitate research that will identify new treatments for ALS. 

ALS patient in a wheelchair with a caretaker

IMPACT OF ALL ALS SO FAR:

  • 32 Active Sites
  • 447 Total Participants Enrolled
  • 82 Fully Remote Participants Enrolled
  • 14,799 Blood Samples
  • 1,778 Cerebrospinal Fluid Samples

How can I get involved in ALS Awareness Month?

There are many ways to get involved, including:

  1. Raise Public Awareness: Spread the word on ALS and increase public awareness by engaging with the general population and ALS community via personal connections, clinic and hospital relationships, and social media platforms.
  2. Engage with Government: Address ALS-related issues with your local, regional, or national governmental representatives.
  3. Support ALS-Organizations: Join or donate money to ALS-associated organizations, like the ALS Association, the ALS United network, I AM ALS, NEALS, Les Turner ALS Foundation, ALS Therapy Development Institute (ALS TDI), and Compassionate Care ALS.
  4. Participate in Research: Whether you have ALS or not, you can get involved in research and truly make a difference in bettering ALS understandings and advancing ALS drug and therapy development. To investigate ALS research opportunities, visit the NEALS “Search for a Trial” finder, ALS Therapy Development Institute’s (ALS TDI’s) Trial Navigator, or ClinicalTrials.gov. Additionally, ask your general clinician or other healthcare professionals for information about ALS research occurring in the surrounding clinics and hospitals.
  5. Attend or Volunteer at Events: For local or regional ALS events, simply search for “ALS events near me” in the search engine of your choice. However, here is a short list of some upcoming ALS events that might interest you:
    • May 7-10: I AM ALS Community Summit in Washington D.C.: join an event focused on providing a knowledgeable, safe, and hopeful space for people living with ALS and their family, friends, and caregivers.
    • May 17: Night of Hope in Kansas City, MO: attend a dinner, auction, and award show to celebrate members of ALS community and ALS Association network.
    • May 18: Run for Hope 5 in Norristown, PA: walk or run, raise funds, and raise awareness for the ALS community by attending the Hope Walks event with the ALS Hope Foundation.
    • May 19: ALS Golf Classic in Valencia, CA: spend a day playing golf, raising funds, and raising awareness for the ALS community at this event through ALS Network.
    • May 20: Fight ALS Film Fest: join a film and book panel to discuss the life of Lou Gehrig. Make sure to watch “Pride of the Yankees” and read “Luckiest Man” to be fully prepared for the ALS TDI’s virtual event.
    • May 31: Faces of ALS: read, like, and share the tributes to honor ALS patients that have been posted on ALS ONE’s social media channels throughout the month.
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Multiple screens, desktop, tablet laptop and phone showing the ALL ALS Website

ALL ALS consortium launches website to advance ALS research

ALL ALS Consortium Launches Website to Advance ALS Research

The Access for All in ALS (ALL ALS) Consortium announced the launch of its official website, creating a central hub for information about its initiatives and clinical research studies. ALL-ALS.org is designed to inform and engage researchers, clinicians, and current and prospective study participants.

READ FULL RELEASE HERE >

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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). 

READ FULL RELEASE HERE >

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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. 

READ FULL RELEASE HERE >

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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.

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News & Press

ALL ALS Consortium

If you wish for a member of study team to contact you about the ALL ALS consortium, please fill out our Participant Interest Intake Form.

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Funding:

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

Participant Interest Form