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The mission of the Northeast ALS Consortium (NEALS) is to rapidly translate
scientific advances into clinical research and new treatments for people
with Amyotrophic Lateral Sclerosis (ALS) and motor neuron disease.

Resources for Patients & Families
New Research Participation Survey for PALS
(September 9. 2014)
Researchers from the University of Michigan and University of Rochester are conducting a survey asking PALS for their perspectives and opinions on research participation.  The aim of the survey is to study how people understand different issues related to research participation such as their understanding of purpose and potential benefits and risks of research.  The long term goal of this project is to improve the informed consent process.

The survey is an online survey and takes about 5-8 minutes to complete.  It involves reading a short description of a hypothetical research study and then answering some questions asking for your opinion.   The survey is funded by a grant from the National Institutes of Health. 

If you are interested in the survey, please contact the researchers at this email address: alssurvey@umich.edu. They can provide further information and a link to the survey if you are interested in participating.

Statement on U.S. BrainStorm Trial
We have had many inquiries regarding the BrainStorm Stem Cell Therapeutics Clinical Trial. BrainStorm is currently conducting a Phase IIa dose-escalating trial at the Hadassah Medical Center in Israel. We are continuing to follow the progress of the study in Israel and will keep the NEALS website current on all new trials and start dates.


Protocol information and eligibility criteria for the BrainStorm trial can be found on the US Government’s clinical trials website. Please continue to check here for new developments about this trial.
 
 

 
 
 
 
Resources for Researchers
National ALS Registry for ALS Researchers
(June 1, 2014)
If you are an ALS Researcher and would like to use the National ALS Registry to help recruit ALS patients for your study, click here. To see a list of ALS Researchers who are already using the National ALS Registry's research notificaton tool to help recruit patients for their studies, click here.

NEALS Databases
NEALS has six de-identified ALS trial databases available for mining. Collected since the birth of NEALS, these ALS trial databases are a great resource for ALS research. Get the data >>
 
NEALS Samples
Samples from the NEALS repository are available to researchers for the purpose of furthering the understanding of ALS or motor neuron disease and developing disease biomarkers.
Get the samples>>

 
 
News & Events
 
ALS Association/NEALS PALS Webinar: ALS Clinical Trial Pipeline Series - Spring 2015
On June 15th, Mass General Hospital's Dr. Merit Cudkowicz will discuss the ALS clinical trial pipeline and answer questions about the current state of clinical research. This webinar will focus on current and upcoming ALS clinical trials. Register here.

NEALS Attends 2015 National ALS Advocacy Day and Public Policy Conference

(May 20, 2015)
The event which brought together people with ALS, representatives of nearly every major ALS organization, and advocates from across the country, provided a forum to share ALS stories, hear about the latest research opportunities and strategies, and urge Congress to make a difference in the fight against ALS. Read more here.

Progress coming in amyotrophic lateral sclerosis, but rigorous studies needed
(April 23, 2015)
The community of individuals living with amyotrophic lateral sclerosis (ALS), or Lou Gehrig's disease, has endured many false hopes for promising therapies and is still waiting for the first disease-modifying drug. Nevertheless, "we have made huge progress in the last decade in ALS," Merit Cudkowicz, professor of neurology at Harvard Medical School and chief of the neurology service and director of the MDA ALS Clinic at Massachusetts General Hospital, told participants in an integrated neuroscience session on ALS at the American Academy of Neurology (AAN) 67th annual meeting. Read the entire article here.


FDA ALS Statement

(April 21, 2015)
[FDA] call upon Genervon to release all the data from their recently completed trial in order to allow a more informed discussion of the trial findings among ALS stakeholders. Read the entire statement here.

The ALS Association, Harvard Stem Cell Institute, and Massachusetts General Hospital Neurological Clinical Research Institute Collaborate with GlaxoSmithKline on New ALS Clinical Trial
(April 15, 2015)

The ALS Association, Harvard Stem Cell Institute, and Massachusetts General Hospital Neurological Clinical Research Institute today announced they are collaborating with GlaxoSmithKline (GSK) on a clinical trial to evaluate the potential of an anti-epileptic drug in ALS patients. In parallel testing, brain cells will be made from each patient’s stem cells to see if they can predict which patients might respond to the medicine.
 
The trial will evaluate the potential of the drug, Retigabine, which has a unique mechanism of action and can calm the excitability of nerve cells that are thought to cause seizures. These “hyperexcitable neurons” are also thought to play a role in ALS. Alongside testing of the medicine, scientists will for the first time create stem cells from these patients to see if they can be used to determine in advance which patients could benefit from the medicine. Read the entire press release here.


Neuralstem Announces Topline Results of Phase II Trial
(March 12, 2015)
Neuralstem, Inc. announced top-line data from the Phase II trial of NSI-566 spinal cord-derived neural stem cells under development for the treatment of ALS. The maximum tolerated dose of 16 million transplanted cells and the surgery was well tolerated.

"We were very excited to participate as a site in this clinical trial," said Merit Cudkowicz, MD, Chief of Neurology, Massachusetts General Hospital and Co-Chair of NEALS." We are hopeful with respect to the top-line results and it is important to move swiftly and safely forward to a larger, confirmatory safety and efficacy study." The NEALS data and systems team participated in the study, under Hong Yu and Alex Sherman leadership. You can read the entire press release here.


2015 Annual NEALS Meeting

The 2015 Annual NEALS Meeting is scheduled to take place Wednesday, November 4 through Friday, November 6. More information coming soon!

 
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