ACTIVE - ALS Research Notification for Clinical Trials and Studies

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

Active: currently recruiting for the specified clinical trial or study
To view list of closed (recruiting has ended) clinical trials and studies click here .

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.

ALS Research Notification Clinical Trials Studies
No Study Name Institution Investigator Research Notification Date* Information Link Status
1 VA Biorepository Brain Bank ALS Study VA Boston Healthcare System Neil W. Kowall, MD
New!
OCT 2020
Click hereexternal icon Active
2 ALS Focus Survey Program ALS Association Sarah Parvanta, PhD
New!
SEP 2020
Click hereexternal icon Active
3 Experiences of symptomatic and at-risk individuals with genetic testing for ALS (Amyotrophic Lateral Sclerosis) Emory University School of Medicine Lauren Lichten, MS
New!
AUG 2020
Click hereexternal icon Active
4 Identify, Analyze, and Evaluate Potential Risk Factors for Amyotrophic Lateral Sclerosis (ALS) Dartmouth-Hitchcock Medical Center Elijah Stommel, MD, PhD
New!
JUL 2020
Email
Ph:866-894-8131
Active
5 Impact of COVID-19 on People Living with Rare Disease and their Families University of Cincinnati Maurizio Macaluso, MD, DrPH
New!
JUL 2020
Click hereexternal icon Active
6 The E-health Application to Modify Oral Energy intake and Measure Outcomes Remotely in ALS Massachusetts General Hospital Anne-Marie Wills, MD
MAY 2020
Click hereexternal icon Active
7 Determining the half-life of SOD1 in the CSF Washington University (St. Louis) Timothy Miller, MD, PhD
DEC 2019
Email
Ph:844-ALS-CARE
Active
8 Psychosocial Impact of Genetic Testing in ALS University of Chicago Raymond Roos, MD
NOV 2019
Click hereexternal icon Active
9 Infant Feeding Characteristics of Patients with Amyotrophic Lateral Sclerosis (ALS) University of North Carolina at Chapel Hill Karsey Erickson
JAN 2019
Click hereexternal icon Active
10 ALS Quest: An online questionnaire for research into ALS University of Sydney Roger Pamphlett, MD, MB
NOV 2018
Click hereexternal icon Active

* Date most recent email was sent.

ALS Projects Supported via the Registry’s Research Notification Mechanism

1. VA Biorepository Brain Bank ALS Study
Studies show that ALS is more common among veterans than civilians. The Department of Veterans Affairs (VA) started the VA Biorepository Brain Bank (VABBB) to support ALS research. The VABBB is a human tissue bank. It collects, processes, stores and gives out nervous system tissue specimens for future studies. The VABBB is enrolling Veterans in the United States who suffer from ALS. It is also enrolling Veterans with diseases related to ALS. Those diseases include primary lateral sclerosis (PLS), progressive bulbar palsy (PBP), and progressive muscular atrophy (PMA). Veterans are enrolled if they would like to make an after-death brain and spinal cord donation. In addition, Veterans enrolled in the VABBB are asked to complete telephone and/or mail surveys about their health every six months or so. The VABBB makes all arrangements for the tissue donation. The donation process occurs at no cost to the Veteran’s family.
To learn more about this study click hereexternal icon

2. ALS Focus Survey Program
ALS Focus is a patient- and caregiver-led survey program that asks people with ALS as well as current and past caregivers about their needs and burdens. 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 so that the entire community can benefit. All information collected is de-identified and shared free of charge to everyone, which provides The ALS Association, researchers from all over the world, and other organizations working on ALS with accurate information around the disease journey. This will help us strengthen care for people with ALS and caregivers, accelerate therapy development, improve clinical trials, influence policy makers, and more. All data can be combined with other studies, including the National ALS Registry, through a global unique identifier (a de-identified code for each participant). Participants also have access to the survey results. Share your experiences now by visiting the ALS Focus web site to register and take surveys: www.alsa.org/ALSFocus/external icon. The first survey asks about Insurance Needs and Financial Burden, which will aid the fight for access to care and financial security for people with ALS and their families. Sign up and participate today!
To learn more about this study click hereexternal icon

3. Experiences of symptomatic and at-risk individuals with genetic testing for ALS (Amyotrophic Lateral Sclerosis)
Most cases of Amyotrophic Lateral Sclerosis (ALS) are sporadic, but approximately 5-10% of ALS can be hereditary or inherited. Genetic testing can determine if an affected individual has hereditary ALS. If so, this individual’s family members can consider having genetic testing to determine if they also will develop ALS. The objective is to evaluate the experiences of individuals who have ALS and at-risk individuals undergoing genetic testing for ALS along with assessing whether published guidelines are followed for at-risk blood relatives when offered genetic testing for ALS; to improve clinical genetics services in ALS. The participants of the study include individuals affected with ALS and at-risk individuals who were offered genetic testing for ALS.
To learn more about this study  click hereexternal icon

4. Identify, Analyze, and Evaluate Potential Risk Factors for Amyotrophic Lateral Sclerosis (ALS)
This study aims to identify, analyze, and evaluate environmental risk factors for ALS. ALS patients residing predominantly in Ohio and New England are encouraged to participate. The study is also open to residents in the continental UnitedStates. Participants will complete an environmental exposure history questionnaire and provide blood and/or saliva. Reimbursements will be provided upon receipt of a completed questionnaire or biological samples.
To learn more about this study, email neuroresearch@hitchcock.org or call 866-894-8131

5. Impact of COVID-19 on People Living with Rare Disease and their Families
The novel coronavirus pandemic is impacting people with rare diseases and their families. We want to find out how many people who have a rare disease have become sick with COVID-19, how COVID-19 has affected someone who also has a rare disease, their symptoms, their treatments and their access to care. We also want to learn how the COVID-19 pandemic is affecting the lives of people with rare diseases who have NOT been sick with COVID-19. The pandemic may have caused stress, anxiety,and made access to care harder, especially in areas where COVID-19 is more common. We want to figure out how the Rare Diseases Clinical Research Network (RDCRN) can respond to those concerns by perhaps providing information or advice through its consortia and patient advocacy groups. It should take you approximately 20 minutes to complete.
To learn more about this study click hereexternal icon

6. The E-health Application to Modify Oral Energy intake and Measure Outcomes Remotely in ALS
The goal of this study is to design, test and disseminate a nutrition app specially designed for people with ALS. The majority of people with ALS around the country do not have access to dietitians. Therefore we wish to create an app which can be used widely by people with ALS. We aim to evaluate an ALS mobile health app that we designed, which enables nutritional counseling and monitoring of weight and disease progression.
To learn more about this study, email mghALSapp@partners.org or call 617-643-2400

7. Determining the half-life of SOD1 in the CSF
Washington University in St. Louis is seeking participants with familial or sporadic ALS for a study to determine the half-life of the protein SOD1 in the cerebral spinal fluid. Mutations in the SOD1 gene are known to cause some forms of familial ALS. Researchers are developing a treatment to reduce the level of SOD1 in familial ALS, but need to know more about how long SOD1 stays in the body (“half-life”) to help determine if the new treatment is effective. The study involves labeling or marking SOD1 with a special type of leucine. Leucine is an essential amino acid that is found in the foods we eat. In order to label the protein, participants undergo either an overnight IV infusion or eat a controlled diet for 10 days. Following this labeling process, participants will then have 4-5 lumbar punctures (spinal taps) over a period of 3-4 months to collect spinal fluid from which the half-life of SOD1 can be measured.
To learn more about this study, email ALS@wustl.edu or call 844-ALS-CARE

8. Psychosocial Impact of Genetic Testing in ALS
The University of Chicago is currently recruiting patients who have a diagnosis of ALS to participate in a research study that involves a one-time survey. The purpose of this study is to better understand how people with ALS make decisions with regard to obtaining or forgoing genetic testing as well as the impact of such testing. This study will also ask questions about your attitudes and thoughts on advance care planning and end-of-life decisions. This study will help clinicians better understand and address the needs of patients and families with ALS.
To learn more about this study click hereexternal icon

9. Infant Feeding Characteristics of Patients with Amyotrophic Lateral Sclerosis (ALS)
The purpose of this survey is to look at the prevalence of different infant feeding methods among people with ALS. There is currently no available data to support an association of infant feeding practices and the development of ALS. This is the first survey to investigate such an avenue.
To learn more about this study click hereexternal icon

10. ALS Quest: An online questionnaire for research into ALS
This is an international study looking for factors in the environment that may lead to ALS. The survey is aimed at finding which risk factors for ALS are present in individual countries. It will also look at which factors are common to many countries. People in different countries will be able to read and answer the questions in their own languages. The study is centered at the University of Sydney in Australia. People who take part in the survey will not be identified because no personal information is given. People both with and without ALS are being asked to take part. Anybody aged 18 years or older can complete the survey.

The survey can be taken using any type of computer at www.alsquest.orgexternal icon. A guide starts with how to complete the survey, followed by a wide range of questions about possible risk factors for ALS. The survey can be completed over a number of sessions, and can be run with software used to assist people with physical disabilities to enter data. We hope the information that arises from the survey will find risk factors that will help find measures to prevent and treat ALS.
To learn more about this study click hereexternal icon

Page last reviewed: September 3, 2020