The ALL ALS Clinical Research Consortium is a community of researchers working closely with people affected by ALS, government, industry, and non-profit organizations to find a cure for this devastating disease. Funded by the NIH, this collaborative research effort is collecting a broad array of clinical data and biospecimens from thousands of participants living with ALS, at genetic risk for ALS, or healthy controls from across the US to advance ALS research that will lead to longer, better lives.
We are actively seeking participants for our ongoing studies. Visit our studies page to learn more about eligibility criteria and how to get involved. Together, we can make a difference!
We know we are not alone in our efforts to understand and fight ALS. We are working to partner with many organizations and research groups to expand this network of impact! The following organizations are some of our partners in this work:
The National ALS Registry is a nationwide program designed to better understand amyotrophic lateral sclerosis (ALS) by tracking how many people in the United States are diagnosed and living with the disease, examining demographic patterns, and studying potential environmental, occupational, and genetic risk factors. Persons with ALS can voluntarily enroll through a secure online portal, complete brief risk factor surveys, receive notifications about clinical trials and research opportunities, and contribute biological samples through the National ALS Biorepository. All information is kept confidential and secure, and researchers use de-identified data to advance research aimed at improving the understanding, treatment, and prevention of ALS.
Target ALS is a medical research foundation dedicated to breaking down barriers in Amyotrophic Lateral Sclerosis (ALS) research to find effective treatments. Since its inception, Target ALS has supported the most promising ideas in fundamental scientific research, with the goal of developing treatments that allow individuals with ALS to live long, high-quality lives.
The Foundation for the National Institutes of Health (FNIH) is an independent non-profit organization that creates and leads alliances and public-private partnerships that advance breakthrough biomedical discoveries. Through the Accelerating Medicines Partnership® in Amyotrophic Lateral Sclerosis (AMP® ALS) Program, FNIH brings together the resources and expertise of the NIH and other stakeholders from academia, life science companies, foundations, patient-focused groups, and research nonprofits to advance ALS research. Central to this effort is the ALS Knowledge Portal, a comprehensive resource developed to centralize, integrate, and share data from major programs like ALL ALS. By providing researchers with streamlined access to rich datasets, the ALS Knowledge Portal is accelerating the development of effective new treatments for ALS.
Our community partners help strengthen awareness of and participation in ALL ALS across the ALS community. The following organizations extend the reach of our mission and support all those impacted by ALS:
Your expertise can make a real difference. The Accelerating Medicines Partnership® for Amyotrophic Lateral Sclerosis (AMP® ALS) is seeking individuals with lived experience of ALS. Whether you’re diagnosed, at genetic risk, a caregiver, or a family member, your insights are invaluable.
If you are interested in joining the Lived Experience and Advocacy Working Group, visit the PWLE Involvement and ALS Advocacy Community section of the AMP® ALS website or email nihalsinformation@ninds.nih.gov.