AGRI is the most comprehensive and inclusive global effort for ALS. We’re closing critical gaps in research and transforming the pursuit of treatments for everyone living with ALS.
Our ALS Global Research Initiative (AGRI) is tackling one of the field’s most urgent challenges: the need for research that reflects the full ALS community.
By enrolling participants from diverse and underrepresented populations around the world, AGRI is helping scientists address some of the most pressing questions in ALS: what genetic and environmental factors increase risk, why the disease progresses differently in each person and how we can accelerate the discovery of new biomarkers and treatments.
Through 16 global research sites and counting, we are breaking barriers to rapidly advance ALS research and build the largest and most inclusive ALS studies to date, ensuring discoveries benefit everyone affected by the disease.
Learn more about AGRI
AGRI is built on open access. Donated patient samples and data are processed immediately and shared with scientists around the world, with no embargoes or waiting periods, currently reaching researchers in more than 30 countries.
AGRI studies
Our studies are transforming the understanding of ALS and accelerating the race towards effective treatments for everyone.
The Global Natural History Study (GNHS)
The only ALS research study that immediately delivers samples and data from participants worldwide to researchers globally.
AGRI is changing how and where ALS research is conducted. With our global reach, we’re closing gaps in data and ensuring diverse participation in research.
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“You are either a conduit of progress or the obstacle. I want to help.”
Margaret Roback
AGRI participant living with ALS
What sets AGRI apart?
Collaboration without borders
AGRI, for the first time, brings together the global ALS community to participate in and help address longstanding gaps in our understanding of the disease like its genetic and environmental risk factors, heterogeneity in presentation and progression as well as to galvanize biomarker discovery.
Breaking down barriers
Our studies are unlocking insights that are changing the trajectory of ALS research, accelerating progress towards effective treatments. Unlike other studies where samples can sit unused for years, we make our samples available to scientists worldwide right away so they can move their ideas forward quickly. We also want to make it easier to participate in our study by providing assistance with travel and lodging.
Commitment to diversity
Data from diverse participants is critical to discovering effective treatments for all. Historically, only ~7% of participants in ALS studies have been of non-Caucasian descent. We’re changing that.
35% of AGRI participants are already non-Caucasian, and we continue to grow the diversity by including diverse communities worldwide. We are expanding the study to more research sites both internationally and domestically, while also bringing research directly to participants through our Community-Based Pop-Up Clinics.
AGRI aims to dramatically change the ALS journey for those diagnosed and their families.
By speeding up the discovery and testing of new biomarkers, we want to make it easier to diagnose ALS early. This means people living with ALS get answers sooner, access care earlier, and explore more treatment options and research opportunities.
AGRI is also helping researchers better understand genetic and environmental risk factors for ALS and how the disease progresses, using real-world patient data to drive discoveries that could lead to new treatments for ALS and to run clinical trials with more precision in the future.
This information isn’t sitting on a shelf, it’s available immediately to scientists and clinicians around the world. When more people can easily access high-quality data, they can work together faster to make new discoveries.
Innovation in action
54k+
vials of biofluid samples collected
16
active sites
380
participants
(214 with ALS and 166 healthy controls)
Which study is best for you?
Community-Based Clinics are opportunities to visit a nearby clinic and one-day events where individuals can donate blood samples for ALS research in community-based locations.
The Global Natural History Study is a broader initiative allowing participants to donate blood, cerebrospinal fluid (CSF), and other biofluids at select research institutions over the course of five in-clinic visits.
Community-Based Clinics 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.
The Global Natural History Study is building the most comprehensive and diverse collection of biofluid samples to support ALS research. By studying these samples, scientists can learn what affects how the disease changes over time. This knowledge can lead to new treatments that can slow ALS and help people to get better care.
Community-Based Clinics are open to people living with ALS and individuals without ALS.
The Global Natural History Study is open to people living with ALS and individuals without ALS.
Community-Based Clinics are hosted in various community locations.
The Global Natural History Study is conducted at clinical sites that are specialized research institutions.
Community-Based Clinics involve participants visiting a one-day event or a standing clinic to donate a small blood sample (two teaspoons).
The Global Natural History Study involves participants scheduling an appointment at a research institution to donate blood, CSF, and other biofluids. Travel to the clinic, and if required, lodging for the participant and caregiver is covered by Target ALS for every visit.
Community-Based Clinics are a quick, one-day event that takes about an hour, requiring minimal participant time. In-community clinics allow for participants to drop by whenever it is most convenient.
The Global Natural History 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.
Community-Based Clinics provide researchers with much-needed blood samples for long-read sequencing while expanding the diversity of ALS research data.
The Global Natural History Study supports a transformative biobanking initiative that fuels breakthroughs in ALS diagnosis and treatment.
For both studies, every participant provides informed consent, which means they agree to share their samples and related genetic data for research. Every participating site has approval from a local or central IRB to conduct the studies. Collecting samples under the same IRB-approved protocol helps ensure consistency, quality, and that participant rights are always protected. Samples and data are de-identified to protect patient privacy.
Every participant helps turn data into discovery.
Whether you’re living with ALS, a friend or family member of someone who lives with ALS, a researcher, or a healthy person who wants to help, your participation will make a difference for the future of ALS understanding and treatment.
Join the Global Natural History Study
Through the Global Natural History Study, we are gathering critical, real-world data to uncover biomarkers that will lead to earlier diagnosis and faster action.
We’re reaching underrepresented communities across the U.S. through local partner clinics and one-day events, which allow for quick and easy biofluid sampling.
With Brain and Spinal Cord Donation, we are extending possibilities by collecting critical tissue samples to discover new treatments for ALS and frontotemporal dementia, a related disease.