ALS Research Notification for Clinical Trials and Studies

Purpose

The following are approved, active ALS studies and clinical trials that have used the National ALS Registry for patient recruitment purposes. Email notifications have already been sent out to persons living with ALS meeting the specific study criteria.

experiments in laboratory

How to join the registry

Joining the Registry

Participant recruitment through the National ALS Registry

Active: Currently recruiting for the specified clinical trial or study
Closed: Recruitment has ended for clinical trials and studies (For more information click here)

Please note, not all clinical trials are listed. To find the latest clinical trials, please visit ClinicalTrials.gov.

To receive automatic notifications about the latest clinical trials and studies, please join the Registry, click here.

This list will be updated as new research proposals are approved by ATSDR.

How to join the registry?

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Table of Active Projects

ALS Research Notification Clinical Trials Studies
No Study Name Institution Investigator Research Notification Date* Information Link Status
 1 Thick Secretions in ALS: What Patients Say

Thick Secretions in ALS: What Patients Say
This research study from Nova Southeastern University aims to better understand thick secretions experienced by people diagnosed with Amyotrophic Lateral Sclerosis (ALS). Thick secretions, such as excessive saliva or mucus, can cause discomfort, breathing difficulties, and increase the risk of infections. The researchers hope to learn more about the experiences of individuals living with ALS who have thick secretions, including how often they occur, how severe they are, and what treatments or strategies patients use to manage them. This information will help doctors and caregivers provide better care and develop improved treatment options.
Participation involves completing a short survey about your symptoms and how they affect you, followed by a brief questionnaire called the Clinical Saliva Scale for Motor Neuron Disease (CSS-MND), which measures the severity of secretion-related symptoms. The total time to complete both parts is approximately 15 to 20 minutes.

Nova Southeastern University Gabriela Lopes DNP, APRN, FNP-BC
New!
JUN 2025
Thick Secretions in ALS Survey Active
 2 Evaluating Verbal Communication in Structured Interactions: Theoretical and Clinical Implications

This research study from Pennsylvania State University aims to assess how structured interactions affect communication clarity and intelligibility in people living with ALS. Participants will be assessed online through Zoom by the researchers, using communications interactions and by answering questionnaires. Each session is exhausted to last arrive 90 minutes.

Pennsylvania State University Jimin Lee, PhD
New!
JUN 2025
Email the Principal Investigator Active
 3 VISTA ALS - Visiting Supplement Trends Among Individuals with ALS

This research study from Nova Southeastern University aims to understand dietary supplement use among people living with Amyotrophic Lateral Sclerosis.
The researchers want to identify the most commonly used supplements, the demographic factors linked to their use, patient knowledge and confidence regarding supplements, and whether they discuss supplementation with healthcare professionals. The goal is to gather information from 600 adults diagnosed with ALS through an anonymous online survey that takes about 20 minutes. The findings will potentially inform future research and guide clinicians in their interactions with patients.

Nova Southeastern University Andrea Charvet, PhD, RDN, LDN
New!
MAY 2025
VistaALS Active
 4 Evaluation of an Online Decision Tool for Persons with ALS Considering Genetic Testing

Researchers at the Ohio State University Wexner Medical Center are studying the efficacy of patient-driven, online decision-making tools to empower and educate ALS patients towards seeking genetic testing.

Ohio State University Wexner Medical Center Jennifer Roggenbuck, MS, CGC
New!
MAY 2025
Email Active
5 PREVENT ALL ALS - Longitudinal Biomarker Study for Participants Who Are Genetically At Risk for Amyotrophic Lateral Sclerosis (ALS)

The ALL ALS Clinical Research Consortium is establishing research to collect a wide range of samples, clinical information and measurements from ALS symptomatic, ALS gene carriers and control participants. There are 35 clinical sites participating in this consortium, and are distributed across the country. Once data and samples are collected and harmonized, it will be made available to research community for future research into ALS and related neurological diseases.

Massachusetts General Hospital and Barrow Neurological Institute James Berry, MD MPH & Robert Bowser, PhD
New!
MAR 2025
ALL ALS Consortium Active
6 Precise Robotically Implanted Brain-Computer Interface Study

This Study is an investigation on a new brain-computer interface developed by Neuralink to help people with paralysis control their computers and phones with the mind and help them to communicate.

Neuralink Corp  Francisco Ponce, MD
OCT 2024
Neuralink Active
7 Identifying Barriers and Facilitators to Exercise Among Individuals with ALS

The University of Alabama is conducting a study that aims to use Social Cognitive Theory to gain insight into the physical activity levels of people living with ALS, with the goal to develop deliverable educational content to enhance physical activity engagement. People living with ALS will be asked to fill out surveys and conduct interviews to capture their experiences and perspectives as it relates to exercise habits, levels of physical activity, exercise self-efficacy and social support they receive. The entire process can be completed in person, virtually, or over the phone, and will take approximately an hour and thirty minutes. Participation is completely voluntary, and choosing whether to participate will not affect your care at UAB or any other facility in any way.

University of Alabama Alexandra Evancho, PT, DPT
OCT 2024
Identifying Barriers and Facilitators to Exercise Among Individuals with ALS Active
8 The ALS Go-Digital Study

The Muscular Dystrophy Association (MDA), in partnership with Mitsubishi Tanabe Pharma America, is organizing a home study to see if the use of digital health technologies can be an effective and more convenient option to track ALS progression than frequent, potentially exhausting office visits.

Muscular Dystrophy Association Mitsubishi Tanabe Pharma America  Multiple
New!
SEPT 2024
The ALS Go-Digital Study Information Page Active
9 Improving Shared Decision-making Surrounding Swallowing Impairments in Person’s Living with Amyotrophic Lateral Sclerosis (ALS)

The research study titled " Improving Shared Decision-making Surrounding Swallowing Impairments in Person's Living with ALS" is about the management of swallowing impairments for patients living with ALS. The purpose of the research is to determine patients, care givers, and healthcare practitioners' beliefs, preferences, and concerns surrounding swallowing impairments in this population.

MGH Institute of Health Professions Bridget Perry, PhD, CCC-SLP
MAR 2024
MGH Study Signup Page Active
10 A Mindful Community for People with ALS and their Primary Caregivers

The study titled "A Mindful Community for People with ALS and their Primary Caregivers," aims to explore and enhance the quality of life for individuals living with Amyotrophic Lateral Sclerosis (ALS) and their primary caregivers through an online mindfulness-based intervention. It is designed as an RCT, to investigate the impact of Langerian mindfulness on the psychological and physical wellbeing of people with ALS and their caregivers. This research is particularly important as it addresses both the individuals with the diagnosis and those who play a critical role in their care and support. We believe that our findings could lead to significant improvements in support strategies and overall quality of life for the ALS community.

Harvard University Ellen Langer
FEB 2024
Harvard Study Flyer [PDF - 213 KB] Active
11 Healey ALS Platform Trial

The HEALEY ALS Platform Trial is enrolling people living with Amyotrophic Lateral Sclerosis (ALS) to test the efficacy of multiple investigational products. The platform trial is designed to decrease the time it takes to test new potential therapies and increase access to research for people living with ALS. One of the innovative features of the Platform Trial is that enrollment will continue as more investigational products are added

Massachusetts General Hospital Merit Cudkowicz, MD
SEP 2023
Healy Trial Flyer [PDF - 101 KB] Active
12 ALS Focus Mobility at Home Survey

ALS Focus is patient- and caregiver-led survey program from The ALS Association that asks people with ALS, as well as current and past caregivers, about their needs and preferences throughout their disease journey. We are proud that every step of the survey development process is informed and reviewed by a committee of people with ALS and caregivers.
The goal is to learn as much as possible about individual experiences, needs, and challenges, so that the entire community can benefit. All information collected is de-identified and shared free of charge to researchers from all over the world and other organizations working on ALS. We are forming robust and accurate data showing the experiences and needs of people with ALS and their families. Open data helps us strengthen care for people with ALS and caregivers, accelerate therapy development, improve clinical trials, influence policy makers, and more.

ALS Association Sarah Parvanta, PhD
SEP 2023
ALS Focus Survey Program Page Active
13 The ATLAS Study

The ATLAS Study is part of a larger clinical research effort to evaluate the safety, dosing, and efficacy of an investigational drug (tofersen) delivered via intrathecal administration in people who have a confirmed SOD1 gene variant. The ATLAS study will evaluate whether starting tofersen early (before clinical signs or symptoms that indicate the onset of ALS) will delay the appearance of signs or symptoms of ALS and/or reduce the loss of function over time as compared with starting tofersen once signs or symptoms appear.

Biogen, Inc. Stephen Garafalo
JUL 2023
Atlas Study Information Page Active
14 Radicava®/(Edaravone) Findings in Biomarkers From ALS

Radicava has been shown to slow the loss of physical function in ALS and was approved by the FDA in May of 2017 as a treatment for ALS. In this research study we want to learn what changes happen in patients with Amyotrophic Lateral Sclerosis (ALS) that can be seen in the blood and urine when taking Radicava. These measurable indicators of change are called biomarkers. This study hopes to learn more about the biology of ALS, disease progression, and the treatment effect of Radicava by studying biomarkers. The study plans to enroll up to 300 patients who will take Radicava over a 24 week period. Participants are to complete 6 cycles of Radicava infusion and provide blood and urine for analysis. You may be eligible for this study if you have been diagnosed with ALS, are 18 years or older and after discussion with your physician, the decision was made to prescribe Radicava. Study participants will obtain drug through their own current medical/pharmacy coverage plan (i.e. Medicare, HMO, PPO, etc.).

Mitsubishi Tanabe Pharma James Berry, MD
MAR 2023
Radicava®/(Edaravone) Study Flyer [PDF - 212 KB] Active
15 Primary Lateral Sclerosis Natural History Study

The purpose of this study is to improve the current research status of Primary Lateral Sclerosis (PLS) by studying the natural history of the disease to determine how it progresses without any drug treatment. We're hoping that information gained from this project will prepare the research community for future clinical trials in PLS.

Columbia University Medical Center Hiroshi Mitsumoto, MD, DSc
FEB 2023
Columbia University PLS Study Flyer [PDF - 4 MB] Active
16 Feasibility of the BrainGate2 Neural Interface System in Persons with Tetraplegia

The goal of the BrainGate2 Clinical Trial is to see if a new medical device called the BrainGate2 Neural Interface System (also called "BrainGate") is safe and effective at giving people with paralysis the ability to control a computer cursor and other assistive devices with their thoughts.

Massachusetts General Hospital Leigh R. Hochberg, M.D. Ph.D
JUN 2022
Email the BrainGate2 Trial Investigator Active
17 Evaluation of IONIS in FUS-ALS Patients

The primary purpose of this study is to evaluate the clinical efficacy of ION363 on clinical function and survival in carriers of fused in sarcoma mutations with amyotrophic lateral sclerosis (FUS-ALS). IONIS hopes to obtain more information on the efficacy, safety, pharmacokinetics and pharmacodynamics of the study ION363 in patients suffering from the rare FUS genetic mutation associated with ALS.

Ionis Pharmaceuticals Multiple
JAN 2022
IONIS Study Information Page Active