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Find out about upcoming NEALS meetings, learn more about our trial resources, and stay in touch with the latest ALS research findings.
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The mission of 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 working with BrainStorm on a planned Phase II study in the U.S. and hope to begin the trial this year. 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.

ALS Research Pipeline Webinar - Summer 2014
(August 8, 2014) 
Dr. Merit Cudkowicz (Massachusetts General Hospital) discussed the ALS clinical trial pipeline and answered questions about the current state of clinical research in ALS and motor neuron disease. The full recording, including the Q&A session can be found here
 
NeuRx® Diaphragm Pacing System™ (DPS) In Participants with Amyotrophic Lateral Sclerosis: An Informational Webinar  
(August 6, 2014)
Dr. Jeremy Shefner and Dr. Jonathan Katz presented the DPS in ALS clinical trial and discussed why the completion of this particular study is so important for the PALS population. The full recording and Q&A session can be found here
 
 
 
 
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 Members Attend the American Academy of Neurology Annual Meeting in Philadelphia

(April 30, 2014)
The 66th American Academy of Neurology Annual Meeting was held April 26th-May 3rd at the Pennsylvania Convention Center in Philadelphia, PA. Read more>>

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
 
KineMed Receives U.S. Patent Allowance for Noscapine to
Treat ALS, Parkinson’s Disease, and Diabetic Neuropathy
(September 9, 2014)
KineMed,
a life sciences company, received a patent to treat ALS and other diseases with Noscapine. Read the full press release here.

New Blog Post from PALS Madeline Kennedy

(September 4, 2014)
Madeline Kennedy, MSN, RN discusses the ALS ice bucket challenge, and her plan to beat the odds against her ALS diagnosis. Read the full post here.


NEALS Sites Continue to Participate in ALS Ice Bucket Challenge
(September 3, 2014)
The ALS Ice Bucket Challenge, started by PALS and Boston native Pete Frates, has been steadily raising awareness for the disease and encouraging donations for ALS research since its inception in the summer of 2014. Over the last few months, participation in the ALS #icebucketchallenge has gone viral on social media. The challenge has seen millions of people dump a bucket of ice water on their head and then nominate three others to either do the same or to donate money to the cause. NEALS and the ALS Multidisciplinary Clinic at Mass General Hospital completed the challenge and nominated three other NEALS sites (Drexel, SUNY Upstate, and Johns Hopkins) to do the same, encouraging those sites to then challenge other NEALS sites. Over 50 NEALS sites around the US and Canada have completed the challenge to date. To view each sites challenge video, click here.

Please consider a donation to the NEALS Consortium by clicking here.


Medicinova to Initiate Clinical Trial of MN-166
(August 28, 2014)
Medicinova, Inc announced the FDA approval to initiate a clinical trial of MN-166 (ibudilast) ALS. The principal investigator of the study is Benjamin Rix Brooks, MD, of Carolinas Neuromuscular/ALS-MDA Center in Charlotte, NC.

"Ibudilast, which has pleiotropic pharmacological effects on multiple pathogenic pathways thought to be active in the progression of ALS, will be tested for safety and tolerability as the primary end point in this initial clinical trial," Dr. Brooks explained.  "Clinimetric outcome sensitivity to treatment will be assessed as secondary endpoints to provide preliminary information for evaluation of the sample size that might be required for future clinical trials should the safety and tolerability endpoints be met."

Read the full press release here.


2014 Annual NEALS Meeting Oct. 22 - 24th
The 13th Annual Meeting will take place in late October at the Sandpearl Resort in Clearwater Beach, Florida. For registration information please contact Tara Lincoln, (tlincoln@partners.org).

Dr. Cudkowicz Appears on ALS Crowd Radio
(July 21, 2014)
NEALS co-chair Merit Cudkowicz, MD, MSc appeared on the first installment of ALS Crowd radio to talk about the latest in ALS therapy and innovation.  Read more



 
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