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You can help advance ALS research by participating in the Access for ALL in ALS (ALL ALS) Consortium, a nationwide observational study that collects and shares clinical data and biological samples with researchers.
Enrollment is currently open for people living with ALS, people at genetic risk of developing ALS, and volunteers without ALS who can serve as a control group. |
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This groundbreaking effort aims to improve understanding about ALS and accelerate the development of effective drugs and treatments.
People living with ALS can participate in-person at a study site or 100% remotely from home. You may enroll regardless of your disease stage or where you live in the United States.
People living with ALS can participate in-person at a study site or 100% remotely from home. You may enroll regardless of your disease stage or where you live in the United States.
Is an observational study the same as a clinical drug trial?
No. Clinical trials involve taking experimental drugs or treatments to see if they have an effect on your disease progression. In observational studies, like ALL ALS, you do not take any drugs or treatments. Instead, you provide valuable clinical data and biological samples that can help scientists build knowledge, identify promising areas of research, improve clinical trials, and discover effective treatments.
Here is some important information about ALL ALS:
ALL ALS has enrolled over 1,500 participants to date, but the study still needs more volunteers before enrollment closes in September 2026.
- Most people can participate in ALL ALS and a clinical drug trial at the same time.
- Most people can participate in ALL ALS and another observational study at the same time.
- In order to participate, you need access to a smartphone, tablet, or computer and the internet.
- Data and samples shared with researchers are de-identified to remove participants’ names and personal health information.
- Participation is voluntary. You may stop participating at any time.
ALL ALS has enrolled over 1,500 participants to date, but the study still needs more volunteers before enrollment closes in September 2026.
How to Participate In Person
If you are living with ALS and want to participate in person, you will need to travel to a study site once every four months for up to two years. There are more than 30 ALL ALS clinical study sites across the United States and Puerto Rico.
If your ALS clinic is also an ALL ALS study site, your participation may be integrated into your regular clinic visits. If your regular clinic is not part of this study, you are welcome to participate at any ALL ALS study site in your area.
In-person visits include a set of physical tests, like breathing and hand strength measurements, a symptom questionnaire, and a blood draw. Spinal fluid collection is optional. You will be compensated $75 per in-person visit (amount may be subject to change). Between in-person visits, you will be asked to complete monthly digital surveys and speech assessments.
See this study site map to find out if there is a location near you.
If your ALS clinic is also an ALL ALS study site, your participation may be integrated into your regular clinic visits. If your regular clinic is not part of this study, you are welcome to participate at any ALL ALS study site in your area.
In-person visits include a set of physical tests, like breathing and hand strength measurements, a symptom questionnaire, and a blood draw. Spinal fluid collection is optional. You will be compensated $75 per in-person visit (amount may be subject to change). Between in-person visits, you will be asked to complete monthly digital surveys and speech assessments.
See this study site map to find out if there is a location near you.
How to Participate from Home
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If you are living with ALS, you can participate 100% remotely from home. This includes a virtual visit on a video platform, like Zoom, blood collection by a mobile phlebotomist every four months, and monthly digital surveys and speech assessments for up to two years. You will be compensated $50 per virtual visit (amount may be subject to change).
To learn more, fill out the short interest form below. A study team member will reach out to provide more details and answer your questions. |
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FAMILY AND FRIENDS CAN PARTICIPATE, TOO
ALL ALS needs volunteers without ALS, such as caregivers, spouses, family members, and friends, to serve as a control group. Participation involves three total visits over the course of two years. Each visit is conducted at a study site and will involve a set of tests and a blood draw. Spinal fluid collection is optional. Compensation is $75 per visit (amount may be subject to change).
In order to participate as a control, you cannot have ALS or be known to be at risk of carrying a causative ALS gene mutation or an ALS-related genetic variant.
If you would like to learn more, fill out this short interest form. A study team member will reach out to explain the details and answer any questions.
In order to participate as a control, you cannot have ALS or be known to be at risk of carrying a causative ALS gene mutation or an ALS-related genetic variant.
If you would like to learn more, fill out this short interest form. A study team member will reach out to explain the details and answer any questions.
Getting Started
Once you fill out the interest form, a study team member will contact you to answer any questions and connect you with a research team to verify your eligibility. If you decide to participate, you will need to sign a consent form.
You can also contact the study team directly by email at [email protected].
PREVENT: A Study for People at Genetic Risk of Developing ALS
ALL ALS is also seeking to enroll asymptomatic first-degree relatives of patients with ALS or Frontotemporal Dementia (FTD). To participate, you must be one of the following:
Participation in the PREVENT ALS study involves visits every four months for up to three years. Most visits are remote, though four must be in person. Each visit consists of a set of tests and a blood draw, in addition to digital surveys and speech assessments, which can be completed in your own time. Spinal fluid collection is optional. Compensation is $50 per virtual visit and $75 per in-person visit (amount may be subject to change).
These research efforts are expected to result in knowledge that can lead to more informative, targeted, and personalized drug development.
- A known carrier of an ALS-related genetic variant
- A first-degree relative (parent, sibling, child) of a carrier of an ALS-related genetic variant
- A person with a “compelling family history” of ALS and/or FTD
Participation in the PREVENT ALS study involves visits every four months for up to three years. Most visits are remote, though four must be in person. Each visit consists of a set of tests and a blood draw, in addition to digital surveys and speech assessments, which can be completed in your own time. Spinal fluid collection is optional. Compensation is $50 per virtual visit and $75 per in-person visit (amount may be subject to change).
These research efforts are expected to result in knowledge that can lead to more informative, targeted, and personalized drug development.
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ALL ALS is a nationwide initiative funded by the NIH that aims to advance ALS research and accelerate the development of new treatments by collecting and sharing data and samples from people living with ALS, those at genetic risk, and volunteers without ALS.
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