Throughout this guide, we link to additional resources that can help families learn more about ALS research. Many of these resources are listed below.

ALS CLINICAL TRIALS

  • The ALS Trial Navigator FAQ page goes into greater depth on many frequently asked questions about clinical trials.  
  • The Participating in ALS Research decision tool from the Les Turner ALS Foundation and NEALS can help you learn about research and decide whether it is right for you.
  • The Understanding ALS Clinical Trials and What is it like to participate in a trial? ALS TDI Town Hall webinars feature speakers living with ALS and community discussions.
  • The Understanding Placebo-Controlled Trials page by NEALS goes into greater depth about the use of placebos.
  • North Star ALS seeks to make ALS research understandable and accessible to families. Its webinar series can help you make research decisions and learn how to engage with care teams and research sites.
  • The Healey ALS Platform Trial takes a unique approach to clinical trials that accelerates progress and reduces the number of people who get placebos.
  • Our Alternative Treatments page addresses potential risks from unregulated trials and provides information to help you make informed decisions.
  • ALSUntangled is a trusted website that systematically evaluates alternative and off-label treatments (AOTs) that are of interest to people living with ALS.
  • The Clinical Trial Definitions page on the NEALS website defines some of the technical terms you may encounter when searching for clinical trials.
  • Our Non-Drug Interventions page highlights how attending an ALS clinic and using noninvasive ventilation can help people live longer and have a better quality of life.

ALS OBSERVATIONAL STUDIES

  • This webinar on Observational Studies hosted by the Les Turner ALS Foundation explains why observational studies are so important for ALS research.
  • The Learn About Studies page on ClinicalTrials.gov provides helpful information about clinical trials and observational studies.​
​Visit the Observational Studies page in this guide for descriptions and links to some ongoing observational studies for ALS.

ONLINE SEARCH TOOLS

  • The ALS Trial Navigator is a user-friendly online search tool for people looking for an ALS clinical trial or observational study. It was developed by ALS TDI and is managed in partnership with NEALS. 
  • ClinicalTrials.gov is a comprehensive database for clinical trials and observational studies around the world. It is run by the National Institutes of Health (NIH). Although it includes all diseases, you can filter for ALS.
  • The ALS Signal Dashboard by I AM ALS was created by ALS patients, caregivers, and advocates. It focuses exclusively on disease-modifying interventional clinical trials for ALS (not observational studies or symptom management trials). You can search by drug, genetic target, and other criteria.
  • The ALS Network’s clinical trial finder uses artificial intelligence (AI) to provide a user-friendly interface, multiple ways to search and filter, and prebuilt forms for emailing research study teams. 
  • Everything ALS has developed an online tool called SAVA AI that uses AI to match people with ALS clinical trials and observational studies.
  • The World Health Organization’s International Clinical Trials Registry Platform (ICTRP) is an online tool that allows  you to search for trials around the world, including trials that target rare genetic variants.

EXPANDED ACCESS PROGRAMS FOR ALS

ALS TISSUE DONATION

  • In this Tissue Donation webinar hosted by the Les Turner ALS Foundation, Dr. Lyle Ostrow discusses the tissue donation process in detail.
  • In this Demystifying Brain and Tissue Donation webinar hosted by I AM ALS, researchers and people living with ALS share information and perspectives.
  • Target ALS has a brain and spinal cord donation program with centers in Phoenix, Washington, DC, New York City, San Diego, St. Louis, and Scotland.
  • The NIH runs a nationwide tissue donation program that includes ALS. You can enroll through the Brain Donor Project.
  • The VA ALS Biorepository Brain Bank is a tissue bank specifically for Veterans who have been diagnosed with ALS.

GENETIC ALS RESEARCH

  • You can learn about genetic ALS, genetic counseling, and genetic testing on our Genetic ALS page. 
  • End the Legacy is an advocacy organization and community that provides support, educational webinars, and advocacy opportunities for people impacted by genetic ALS and FTD. 
  • The Association for Frontotemporal Degeneration provides education and support for families impacted by FTD.
  • The Genetics and ALS webinar hosted by Everything ALS addresses the implications of genetic testing and explains differences between familial and sporadic ALS.
  • ​The Genetic Testing and Counseling webinar hosted by NEALS answers common questions about testing and counseling.
  • The Conversation with a Genetic Counselor webinar hosted by the Les Turner ALS Foundation discusses the genetics of ALS-FTD spectrum disorders, the genetic testing process, and more.

FOR PEOPLE LIVING WITH GENETIC ALS

FOR PEOPLE AT RISK OF GENETIC ALS

  • This My ALS Decision Tool™ from the Les Turner ALS Foundation can help family members who are considering genetic counseling and testing.
  • The How ALS Genetic Mutations Are Inherited webpage from the ALS Association helps explain potential genetic risk.
  • End the Legacy’s At Risk Care Centers webpage lists ALS clinics that have developed programs dedicated to supporting individuals and families affected by genetic ALS and FTD.

ALS RESEARCH FOR VETERANS

  • The VA ALS Biorepository Brain Bank is a tissue bank specifically for Veterans who have been diagnosed with ALS.
  • The Veteran ALS Action Committee at the ALS Hope Foundation is a volunteer group of advocates, caregivers, and Veterans dedicated to increasing Veteran awareness of and participation in clinical trials and research through education and outreach. It coordinates CRLI training programs specifically for Veterans. 
  • The Veterans Team at I AM ALS is a volunteer committee that seeks to raise awareness about veteran-specific ALS issues, educate the public, and connect veterans with resources.
  • Champion Insights is a fully remote observational study that seeks to better understand why certain populations—such as military personnel, first responders, and high-performing athletes—are diagnosed with ALS at higher rates than the general public.
  • ​The VA Million Veterans Program (MVP) is a national research program that looks at how genes, lifestyle, military experience, and exposures affect health and wellness in Veterans. This program is not ALS-specific, but researchers are looking into ways to study and compare data from ALS and non-ALS participants.

ALS PRECLINICAL RESEARCH

  • ​​This What is Preclinical Research? article from ALS TDI focuses on the importance of preclinical research and the steps involved.
  • This Preclinical Research webinar hosted by NEALS features three experts who discuss the role of preclinical research and why collaboration is important.
  • This Drug Development Process webpage from the FDA provides an overview of the entire process from scientific discovery through drug approval.

ADVOCACY AND ENGAGEMENT OPPORTUNITIES

  • The ALS Clinical Research Learning Institute® (CRLI) is a two-day intensive training organized by NEALS that empowers people impacted by ALS to help influence and improve the ALS research process.
  • NEALS Community Educational Webinars cover topics such as updates on clinical trials, best practices for clinical care, and current research efforts in ALS causes and treatments.
  • The ALS TDI Town Hall is a virtual discussion led by experts in the fields of research, patient advocacy, care, awareness building, and fundraising.
  • The ALS Learning Series hosted by the Les Turner ALS Foundation includes presentations about research by experts, followed by interactive Q & A sessions.  
  • Expert Talks hosted by Everything ALS invites experts to present and discuss a wide variety of research topics.
  • The Empowering Your ALS Journey webinar series hosted by The ALS Association has expert speakers who address important topics related to research, advocacy, and more.
  • The ASK ME educational webinar series hosted by ALS Network provides an opportunity for people living with ALS and their families to learn more about topics related to research and care.
  • The Clinical Trials Team hosted by I AM ALS works directly with researchers, government agencies, and drug sponsors to ensure accessibility, efficiency, and humaneness of ALS drug and therapy development and approval.
  • The Alliance Fellows Program from the International Alliance of ALS/MND Associations is an online educational program that helps participants around the world build the knowledge and confidence needed to engage more meaningfully in research and advocacy conversations.
  • The annual NEALS Meeting takes place every October online and in Clearwater, Florida. It brings together researchers, clinicians, industry leaders, government and foundation partners, and individuals with lived ALS experience to discuss the latest advancements in ALS research and treatment.
  • The annual International Symposium on ALS/MND takes place in late November or early December at rotating locations around the world. It is the biggest annual conference dedicated to ALS/MND research.
  • The Patient Fellows Program from the International Alliance of ALS/MND Associations can provide in-person or virtual registration for the annual International Symposium for people impacted by ALS/MND.
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You are welcome to contact us if you think we have missed an important resource about ALS research that might benefit families.

ALS RESEARCH GUIDE

Partners and Collaborators