ALS is a challenging disease to understand and treat, but researchers around the world are conducting trials and studies, collaborating, and making progress. In recent years, funding for research has increased significantly thanks to advocacy efforts from the ALS community.
Participation from people who have been diagnosed with ALS is the key to building a better understanding of the disease, which will lead to effective treatments and ultimately a cure. There are a variety of ways you can help, such as enrolling in clinical trials, participating in observational studies, and donating tissue.
Participation from people who have been diagnosed with ALS is the key to building a better understanding of the disease, which will lead to effective treatments and ultimately a cure. There are a variety of ways you can help, such as enrolling in clinical trials, participating in observational studies, and donating tissue.
ALS Clinical Trials
Clinical trials explore new drugs and devices that show promise but may or may not end up being effective. There are always clinical trials looking for participants who have been diagnosed with ALS. Most trials are connected with ALS clinics and require travel to the research site.
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Here are some important things to know about clinical trials:
Some people participate in clinical trials because they want access to a new therapy not yet available to the public that could slow down, stop, or cure their ALS. The reality is that chances are small that a trial drug will turn out to be effective and get approved. Enrolling in a trial is more about volunteering to help advance science and understanding.
One benefit of enrolling in clinical trials is that participants often experience a better quality of life because they have more frequent interactions with ALS professionals who can help answer questions and provide additional support between clinic visits.
- You should not have to pay to participate in any trial.
- Many trials have eligibility criteria, so you may not qualify for certain trials.
- The research team should explain potential risks and monitor your safety.
- You may experience adverse side effects from the drug or treatment.
- You can stop participating at any time.
- You may get the real drug, or you may get a placebo.
Some people participate in clinical trials because they want access to a new therapy not yet available to the public that could slow down, stop, or cure their ALS. The reality is that chances are small that a trial drug will turn out to be effective and get approved. Enrolling in a trial is more about volunteering to help advance science and understanding.
One benefit of enrolling in clinical trials is that participants often experience a better quality of life because they have more frequent interactions with ALS professionals who can help answer questions and provide additional support between clinic visits.
Some people participate in clinical trials because they want access to a new therapy not yet available to the public that could slow down, stop, or cure their ALS. The reality is that chances are small that a trial drug will turn out to be effective and get approved. Enrolling in a trial is more about volunteering to help advance science and understanding.
One benefit of enrolling in clinical trials is that participants often experience a better quality of life because they have more frequent interactions with ALS professionals who can help answer questions and provide additional support between clinic visits.
One benefit of enrolling in clinical trials is that participants often experience a better quality of life because they have more frequent interactions with ALS professionals who can help answer questions and provide additional support between clinic visits.
The Healey ALS Platform Trial
The unique design of this trial accelerates the development of new ALS treatments, reduces the number of participants who get a placebo, and provides greater access at multiple research sites across the U.S. Learn more
ALS Clinical Trial Video SeriesIf you would like to learn more about clinical trials, you can watch the following videos from ALS TDI’s three-part ALS Town Hall series:
- Understanding ALS Clinical Trials - What is it like to participate in a trial? - Current ALS Clinical Trials |
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Expanded Access
When people living with ALS can’t participate in a clinical trial because they don’t meet eligibility requirements, Expanded Access (EA) can offer an additional pathway to taking the experimental therapy. EA opportunities for ALS are very limited and there can be multiple hurdles to participation.
If you want to access a drug through Expanded Access, tell your ALS neurologist. Not every neurologist will have experience going through the EA process. You will need a medical professional to monitor your use of the therapy.
Learn more about Expanded Access on the NEALS and FDA webpages.
If you want to access a drug through Expanded Access, tell your ALS neurologist. Not every neurologist will have experience going through the EA process. You will need a medical professional to monitor your use of the therapy.
Learn more about Expanded Access on the NEALS and FDA webpages.
Alternative or Off-Label Treatments
With so few approved drugs available to treat ALS, some people choose to experiment with alternative or off-label treatments (AOTs) such as supplements, vitamins, minerals, and herbs. You can learn more about AOTs, precautions, and how to make informed decisions on our Alternative Treatments page.
Observational Studies
Observational studies are another way you can help advance ALS research. Observational studies may ask you to do things like fill out surveys, track symptoms on your phone or computer, or provide samples of blood, saliva, or spinal fluid.
Whereas clinical trial participation involves trying a new drug or device, researchers conducting observational studies observe and collect data without trying to intervene to affect your progression. Researchers then use the anonymized data to look for patterns, potential causes, and promising areas for future ALS research.
Generally speaking, eligibility requirements for observational studies are less strict than for clinical trials and the time commitment tends to be less. That said, observational studies vary widely. Some are completely remote, others involve home visits for things like drawing blood, and others may require occasional visits to the research site.
Here are two long-running observational studies that you can do from home:
Whereas clinical trial participation involves trying a new drug or device, researchers conducting observational studies observe and collect data without trying to intervene to affect your progression. Researchers then use the anonymized data to look for patterns, potential causes, and promising areas for future ALS research.
Generally speaking, eligibility requirements for observational studies are less strict than for clinical trials and the time commitment tends to be less. That said, observational studies vary widely. Some are completely remote, others involve home visits for things like drawing blood, and others may require occasional visits to the research site.
Here are two long-running observational studies that you can do from home:
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National ALS Registry
This CDC program collects information from people living with ALS so researchers can better understand potential risk factors and identify areas for future research. Participation involves filling out surveys about occupational and environment risk factors such as past military service, work history, physical activities, and family history. Learn more |
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ALS Research Collaborative (ARC) Study
This ALS TDI research study partners with people living with ALS to gather critical data about movement, lifestyle, medical history, genetics, biomarkers, vocal progression, and cell biology. The anonymized data is made available to researchers around the world. With ARC, you can view your personal data and choose whether or not to share it with your medical team. Learn more |
The search tools further down on this page can help you find additional observational studies.
Tissue Donation for ALS Research
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Another way to help advance ALS research is to donate your brain and spinal cord upon death. This is an unmet need and a valuable contribution to ALS research.
Not every neurologist will raise the topic of tissue donation because it can feel insensitive and lead to a hard conversation. If you are interested, you may need to be proactive and bring up the topic yourself. |
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The logistics of tissue donation can be challenging and may not be possible depending on where you live. Every state has organizations that coordinate tissue donation, but some don’t collect spinal cords, which are needed for ALS research. Other complicating factors can include crossing state lines, coordinating with funeral homes, and getting consent from family members.
If you are interested, it is important to make arrangements well ahead of time. Ask your ALS clinic team if they have any affiliations or suggestions.
The ALS research community is currently working to better coordinate tissue donation efforts and improve accessibility. Here are some resources where you can inquire and learn more:
You can find a more comprehensive list of ALS tissue donation options on the Research Resources PDF on the ALS Research Program (ALSRP) website.
If you are interested, it is important to make arrangements well ahead of time. Ask your ALS clinic team if they have any affiliations or suggestions.
The ALS research community is currently working to better coordinate tissue donation efforts and improve accessibility. Here are some resources where you can inquire and learn more:
- The CDC’s National ALS Biorepository has partnered with the Temple University Postmortem Core to collect tissue that it shares with researchers. If you are interested in donating tissue here or elsewhere, you can email Dr. Lyle Ostrow at [email protected].
- The VA Biorepository Brain Bank accepts tissue donations from U.S. military Veterans who have ALS or related forms of ALS (PLS, PBP, PMA) as well as from Veterans who don’t have ALS or related conditions.
You can find a more comprehensive list of ALS tissue donation options on the Research Resources PDF on the ALS Research Program (ALSRP) website.
How To Search and Make a Decision
Participating in ALS research is a very personal decision. Some people may feel the need to contribute to ALS research even if it may not benefit them personally. Others may prefer to spend their time with loved ones and prioritize other pursuits.
Participation considerations may include the amount of time you need to commit, travel and transportation, associated costs, and your level of caregiver support. Different trials and studies ask for different levels of commitment.
Though there are always ALS research opportunities available, it can be hard to find the right one. You will likely need to be organized, patient, and persistent. It may be helpful to tackle this project together with a family member or friend.
Participation considerations may include the amount of time you need to commit, travel and transportation, associated costs, and your level of caregiver support. Different trials and studies ask for different levels of commitment.
Though there are always ALS research opportunities available, it can be hard to find the right one. You will likely need to be organized, patient, and persistent. It may be helpful to tackle this project together with a family member or friend.
ALS Research Guide and Decision Tool
The Les Turner ALS Foundation and NEALS have created two great resources that can help you learn about ALS research opportunities and decide what is best for you. Visit their ALS Clinical Research Guide and Decision Tool.
If you are interested in participating, discuss options with your ALS neurologist and medical team. Ask about opportunities in your area or ways you can participate from home. You can also use the following online search tools to look for trials and studies:
- The ALS Trial Navigator from ALS TDI is a user-friendly tool that can help you learn about and find clinical trials.
- clinicaltrials.gov is a comprehensive database where you can learn about ALS research opportunities in the U.S. and around the world. We recommend starting with this short tutorial by NEALS with tips on how to best navigate the database.
- The NEALS website provides up-to-date information on ALS trials and studies in the United States.
If you are still not sure which trial might be right for you, the ALS Research Access Nurse at The Healey & AMG Center for ALS, Judith Carey, can help you better understand your options and make the best choice for your individual situation. You can email [email protected] or call her at (617) 724-8995.
Once you have identified a trial or study of interest, contact the research team and ask questions about time commitment, travel, safety risks, or anything else. When you have gathered all the information, you can discuss the opportunity with your loved ones and medical team before making your decision.
