ALS Research Notification for Clinical Trials and Studies

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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

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.

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.

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.).

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.

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.

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.