The ALS Global Research Initiative (AGRI)
Every Voice. Every Community. Every Breakthrough. Everyone Lives.
The ALS Global Research Initiative (AGRI):
A United Effort to Transform ALS Research
The ALS Global Research Initiative (AGRI) represents a groundbreaking, worldwide collaboration aimed at reshaping the landscape of ALS research. Rooted in innovation, inclusion, and impact, AGRI brings together researchers, clinicians, those living with ALS, and healthy individuals from around the globe to tackle ALS from every angle.
AGRI Studies
AGRI is comprised of two groundbreaking studies that are transforming how ALS is understood and treated.
1
The Global Natural
History Study
This international study spans across 14 sites, including underserved groups and diverse regions, to collect comprehensive data on ALS progression.
2
Community-Based
Pop-Up Clinics
Community-Based Pop-Up Clinics are one-day events designed to bring ALS research and care directly to underserved communities.
By conducting our own research, Target ALS fills gaps that are often overlooked or underfunded. ALS is a heterogenous disease, meaning it has several different root causes. Currently, there’s a major gap in our understanding of ALS due to the lack of ethnic, genetic, and geographic diversity among research study participants. We’re tackling this gap by prioritizing enrolling participants from diverse and underrepresented communities in our studies. AGRI is broadening our understanding of how ALS manifests and progresses in different populations, ensuring that effective treatments will be developed for everyone with ALS.
What Sets AGRI Apart?
Collaboration Without Borders
AGRI unites leading minds in science, healthcare, and technology across continents, fostering partnerships that accelerate discovery. With 14 international research sites—and growing—we are breaking barriers to advance ALS research on a truly global scale.
Driving Innovation
By leveraging cutting-edge technologies, AGRI is uncovering new pathways for understanding and treating ALS. We reduce barriers to participation by providing travel reimbursements for those traveling to research sites and utilizing at-home technology to monitor disease progression in addition to biofluid collection. Data from these biofluids is uploaded to our Data Engine, giving researchers worldwide access to these invaluable resources for little to no cost, fostering radical collaboration and accelerating discovery.
Commitment to Diversity
We recognize the importance of diversity in research and strive to ensure every community, regardless of geography or background, is represented. Data from diverse participants is critical to discovering effective treatments for all. That’s why we are expanding our Global Natural History Study to additional research sites both internationally and domestically, while also bringing research directly to participants through our Community-Based Pop-Up Clinics.
Which Study is Best for Me?
Study Overview
Pop-up clinics
A one-day event where individuals can donate blood samples for ALS research in community-based locations.
GNHS
A broader initiative allowing participants to donate blood, cerebrospinal fluid (CSF), and other biofluids at select research institutions.
Purpose
Pop-up clinics
To meet people living with ALS or in the ALS community where they are on their research journey by making research more accessible to all communities.
GNHS
To build a collection of samples for the scientific community that supports ALS research and helps find new treatments.
Who Can Participate
Pop-up clinics
Open to people living with ALS and individuals without ALS.
GNHS
Open to people living with ALS and individuals without ALS.
Location
Pop-up clinics
Hosted in various community locations.
GNHS
Conducted at clinical sites that are specialized research institutions.
Process
Pop-up clinics
Participants visit the pop-up clinic on the scheduled day to donate a small blood sample (two teaspoons).
GNHS
Participants schedule an appointment at a research institution to donate blood, CSF, and other biofluids.
Time Commitment
Pop-up clinics
It is a quick, one-day event that takes about an hour, requiring minimal participant time.
GNHS
This study lasts 12-16 months, with ALS participants visiting the clinic every 4 months and healthy controls visiting twice. During clinic visits, biofluid samples are collected every 3-4 months, while optional at-home digital assessments are completed every 2 weeks.
Impact on ALS Research
Pop-up clinics
Provides researchers with much-needed blood samples for long-read sequencing while expanding the diversity of ALS research data.
GNHS
Supports a long-term biobank that fuels breakthroughs in ALS diagnosis and treatment.
Global Natural History Study
Our Global Natural History Study aims to enroll at least 800 symptomatic ALS participants and 200 healthy controls to create the most comprehensive collection of biofluids for ALS. The study involves longitudinal collection (samples collected over the course of the disease) of blood, urine, and CSF as well as clinical and digital measures of motor, cognitive, speech, and respiratory function. The Global Natural History Study is set to provide valuable insights into the heterogeneous nature of ALS, paving the way for innovative biomarkers that can predict and track disease progression. Engaging populations outside the U.S. will significantly enrich our understanding of ALS.
17,975
Vials of Biofluid
Samples Collected
14
Active Global
Research Sites
196
121 ALS participants & 75 Healthy Controls Currently Enrolled
Where Can I Participate?
The following study locations are actively enrolling patients. Click the button below to get in contact and begin the process at your preferred location. Your participation will make a meaningful impact on ALS research.
- Barrow Neurological Institute, AZ, USA
- Columbia University, NY, USA
- Georgetown University, DC, USA
- Mayo Clinic Jacksonville, FL, USA
- Massachusetts General Hospital, MA, USA
- Northwestern University, IL, USA
- University of California, San Diego, CA, USA
- University of Washington, Seattle, WA, USA
- Washington University in St. Louis, MO, USA
- Baylor College of Medicine, TX, USA
- University of Puerto Rico, PR, USA
- Instituto Roosevelt, Colombia
- Hebrew University of Jerusalem, Israel
- Seoul National University Hospital, South Korea
Global Natural History Study FAQ’s
Who will be able to use my biofluid samples?
Target ALS biofluid samples will enable scientists and researchers worldwide to help identify biomarkers and develop treatments that may improve the quality of life for those affected by ALS.
How often are the biofluids collected?
ALS participants are asked to visit their local collection site for five study visits about every 4 months
(for around 18 months). Healthy participants have two study visits with 12 months between visits (for around one year).
Why is CSF so important to collect?
Cerebrospinal fluid (CSF) is a protective biofluid that surrounds and protects the brain and spinal cord. It’s a powerful source of biomarkers, such as proteins and RNA, that can reveal crucial insights into brain and spinal cord health, offering a direct window into disease processes. While collecting CSF requires a lumbar puncture (spinal tap), it remains one of the most effective ways to study the central nervous system.
How often will at-home measures be collected?
At-home measures are optional. Speech (Aural Analytics or Modality AI) will be collected bi-weekly using a web-based application on your personal cell phone, laptop, or desktop device. Breathing (ZEPHYRx) will be collected bi-weekly using a device that is provided, and a web-based application on your personal cell phone, laptop, or desktop device.
You can still take part in the study even if you decide not to do at-home speech or breathing measures.
Where will it be done?
Biofluid samples are collected at research clinics participating in our global natural history study.
Can I donate biofluids if I am under 18 (for friends or relatives with ALS)?
You must be at least 18 years old to donate biofluids to the Target ALS Global Natural History Study
How will my privacy be protected?
Participant’s medical information obtained during this study is strictly confidential and stored using a HIPAA-compliant system to meet federal regulations for maintaining confidential information. We adhere to all local and federal guidelines and regulations regarding participant confidentiality.
Can I participate if I do not have ALS?
Yes, you can take part in the study as a “healthy control” participant. Controls in ALS research are important because they give a baseline to compare results and make sure the findings are accurate.
How do I participate if I am not near a study location?
If you are not near a study location, you may still be able to participate. To make it easy for participants to travel to a clinic to participate in research, we reimburse travel and hotel costs for the participant and their caregiver for every visit. Participants are also provided compensation for completed study assessments.
Community Based Pop-Up Clinics
By studying how genetic and environmental factors affect ALS in diverse populations, we can develop treatments that are safe and effective for everyone with ALS. However, many people living with ALS, especially those from underserved communities, face many challenges when it comes to participating in research. Barriers including financial difficulties, lack of insurance and access to healthcare, lack of educational materials, and limited ability to travel to ALS clinics may hinder participation. To address these barriers, Target ALS has launched a series of one-time blood collection events in partnership with local ALS clinics and organizations. The study aims to enroll approximately 5,000 symptomatic individuals living with ALS and 1,000 healthy control participants to provide a one-time blood sample and answer an environmental questionnaire, providing a less daunting opportunity to participate in ALS research.
How it Works
We’ve designed this study to be simple and easy, where in just about an hour, you can easily donate your blood, saliva, and answer a few questions. Your time will make a powerful difference in the fight against ALS.
In this study, we will collect blood from at least 5,000 people with ALS and 1,000 healthy people. Along with the blood sample, participants will fill out a questionnaire about their health history and environment. People with ALS will also complete the ALSFRS and a survey asking about the symptoms they are experiencing. Blood samples will be analyzed using “long read” sequencing to identify novel genetic risk factors across this diverse population. All de-identified data from each patient will be shared with researchers globally almost in real-time through the Target ALS Data Engine.
There will be a smaller study within this research where the first 40 people with ALS and 40 healthy participants can choose to have their saliva analyzed for microbes. These participants will also be asked to complete questionnaire, which helps us understand their dietary habits. This information can help inform whether specific geographic locations or dietary habits or restrictions may lead to the presence of unique gut microbes that impact disease risk and progression.
Community-Based Pop-Up Clinics FAQ’s
What is Target ALS?
Target ALS is a 501(c)(3) medical research foundation dedicated to breaking down barriers that slow down progress in ALS research. Since 2013, our unique Innovation Ecosystem has transformed the landscape of ALS research by accelerating the most promising scientific ideas into actionable drug development programs. We democratize access to advanced research tools, foster cross-disciplinary collaboration, and galvanize industry involvement, all driven by our core values of impatient optimism, deliberate disruption, and radical collaboration.
Why is Target ALS the best group to conduct this study?
Our streamlined workflow enables rapid data generation from participant samples, fueling our Data Engine with real-time information accessible to researchers worldwide. This approach ensures that every contribution is impactful, empowering the ALS community with meaningful advancements towards transforming ALS into a manageable disease, and ultimately building a world where Everyone Lives. Data from our Post-mortem Tissue Core has already fueled groundbreaking genetic findings that are leading to the development of novel therapies and biomarkers for ALS.
Who is leading this study?
This study is being led by Target ALS research scientists, in collaboration with ALS clinics and ALS non-profit organizations. To ensure the data we collect reflects the diversity of those living with ALS, we’re setting up pop-up clinics in underrepresented communities across the country. By leveraging our internal scientific expertise with our extensive network of clinical professionals, we’re committed to gathering data that reflects diverse genetic backgrounds and identifying barriers to research that can impact health outcomes, such as social and environmental factors and access to care for ALS treatment and diagnosis. This inclusive approach allows us to better understand ALS across all populations, bringing us closer to breakthroughs that can benefit everyone affected by the disease.
What do I need to do to participate in this study?
This study is a pop-up event, which means every event will be in a different location around the United States. To find out if there is an upcoming event near you, please complete the RSVP form, which will provide you with details on future events. It’s a straightforward process, and your involvement will make a meaningful impact in advancing ALS research.
I don’t have ALS, why am I needed?
Including healthy controls in ALS research is essential to understanding the disease and identifying effective treatments. As a healthy participant, you provide a vital comparison that helps researchers distinguish between changes specific to ALS and those that occur in the general population. This comparison allows scientists to pinpoint unique biomarkers and patterns linked to ALS, which are critical for developing accurate diagnostics and targeted therapies. By participating, you’re helping researchers build a complete picture of ALS, bringing us closer to breakthroughs that could transform it into a manageable condition and, ultimately, save lives. Your involvement makes a significant difference in the fight against ALS.
What happens to my data?
Participant data is stored in Google Cloud using DNAstack technology, built to maintain data privacy but also to allow for open science following standards created by the Global Alliance for Genomics & Health (GA4GH). Participants can check our website to see the study status and their impact on research.
I still have questions, is there someone I can contact?
Absolutely. If you have any questions about this study, please email hello@targetals.org. You can also use the Contact Us form linked here.
Fueling ALS Discovery Through the
Target ALS Data Engine
All data collected from AGRI is uploaded to the Data Engine, fueling the next breakthrough—closing gaps, breaking barriers, and accelerating the path to effective treatments. Together, we are building a world where Everyone Lives.
Data Generation
Patient biosamples, imaging, and clinical data are gathered from global ALS studies, biobanks, and leading research institutions.
Standardization
Data undergoes rigorous quality control, anonymization, and harmonization to ensure accuracy and security.
Global Access
Scientists worldwide can securely explore and analyze these datasets, unlocking new insights to propel ALS research forward.
The Target ALS Data Engine fuels discovery by providing researchers worldwide with open access to high-quality patient data. By integrating genomic, transcriptomic, proteomic, and clinical datasets, this powerful platform accelerates breakthroughs to find effective treatments for ALS.
Advancing Discovery
Generating Insights
Revolutionizing Research
Igniting Change
ALS is a race against time, and AGRI is accelerating every step—from diagnosis to treatment. Through the Global Natural History Study and community-based pop-up clinics, we are gathering critical, real-world data to uncover biomarkers that will lead to earlier diagnosis and faster action.
By making research more accessible and inclusive, we are bringing together leading scientists, clinicians, and industry experts worldwide to drive breakthroughs at an unprecedented pace. Every participant is helping turn data into discovery—and discovery into real hope for the future of ALS treatment.
The Power of Participation
Every breakthrough in ALS research starts with those who choose to participate. By providing biofluid samples, research participants make it possible for scientists to uncover critical insights that drive new discoveries and potential treatments.
Driving ALS Discovery with Data
With firsthand experience as a caregiver and a researcher, Cooper Penner is leveraging the Target ALS Data Engine to explore new ALS treatment targets.
ALS research is evolving, thanks to stem cell innovations that provide scientists with better tools to develop new treatments—with the help of research participants.
Scientists are studying how SOD1 protein clumps together in ALS—unlocking new paths to treatments, made possible by research participants like you.
Where We’re Going
AGRI is working to change the ALS journey for those diagnosed and their families. By unlocking biomarkers, we’re making faster diagnosis possible—helping patients get answers sooner, access care earlier, and explore more treatment options and research opportunities.
But diagnosis is just the beginning. AGRI is helping researchers better understand how ALS progresses, using real-world patient data to drive discoveries that could lead to new treatments. This information isn’t sitting on a shelf—it’s readily available to top scientists and doctors around the world, so more minds can work together to make ALS a livable disease.
The Ultimate Outcome
With diverse patient data, global collaboration, and cutting-edge research, AGRI is breaking down barriers and speeding up the search for effective treatments. This is a new era—where discoveries move quickly from the lab to real impact.
Every step forward brings us closer to a future where no one faces ALS without answers, options, and hope.
Let’s Build a World Where Everyone Lives, Together.
Whether you’re living with ALS, a friend, a family member, researcher, or supporter, your participation can make a difference.
