Finding ALS Research Opportunities | The ALS Association

When most people think about participating in research, they think about clinical trials, which test the safety and effectiveness of new drugs and treatments. Not everyone is able to participate in clinical trials, but observational and survey studies are also essential for building knowledge that can help make ALS a livable disease. Observational studies give researchers the opportunity to learn about the course of a disease or find new ALS genes or biomarkers.

Your participation is vital for moving ALS research forward quickly toward new treatments and cures. If you are interested in taking part, we encourage you to talk with your doctor. You can also look for studies recruiting new participants using the instructions below. 

Patient talking with his doctor at an ALS Clinic

Starting Your Search

The ALS Association partners with the Northeast ALS Consortium (NEALS) to provide the most accurate and up-to-date information about both federally and privately funded ALS clinical trials and observational studies. People with ALS and their caregivers can speak directly with a NEALS ALS trial liaison by calling 855-437-4823 or emailing alstrials@neals.org. The liaison can answer your questions about participating in research and assist with finding and/or enrolling in a trial or study. 

Other Resources

There are several other ways you can search for research opportunities, whether you are interested in participating or simply would like to get more information: 

ClinicalTrials.gov is the largest database of privately and publicly funded clinical studies being conducted around the world. It is maintained by the National Institutes of Health (NIH) and provides information about both interventional and observational studies for people with ALS, their family members and their caregivers.

ALS Signal is a search tool developed by I AM ALS that provides information about ongoing and upcoming clinical and observational research. The tool links to the ClinicalTrials.gov database for more information about each study. 

ClinWiki has developed an ALS-specific search tool for both clinical trials and observational studies. You can narrow your search using various categories, such as ALS onset, breathing ability, remote monitoring, etc. 

ALS Focus Survey Program

ALS Focus is a patient- and caregiver-led survey program that asks people with ALS and current and past caregivers about their needs and burdens. The goal is to learn as much as possible about individual experiences throughout the disease journey.

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