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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: 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 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

ALSA/NEALS Webinar: Research Updates 

(January 13, 2016)
Dr. Terry Heiman-Patterson will review the most significant takeaways from the Annual NEALS Meeting and the International Symposium on ALS/MND. Register here.

ALSA/NEALS Webinar: ALS and the Clinical Trial Process

(December 1, 2015)
Interested in enrolling in a trial, but need to understand the research process better? Join us on December 1st for an informative webinar led by MGH's Dr. James Berry. Register here.

Tar Heel: Duke Dr. Richard Bedlack collecting new ideas to fight ALS

(November 14, 2015)
Bedlack founded and directs Duke University’s ALS Clinic, which takes an unusual interdisciplinary approach to helping ease the suffering and extend the lives of patients with this fatal disease. Read more here.

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BrainStorm Announces Treatment of Final Patient in US Multicenter Double Blinded Phase 2 ALS Trial

(October 7, 2015)
The study was designed to evaluate the safety and efficacy of transplantation of Autologous Mesenchymal Stem Cells Secreting Neurotrophic Factors. Read more here.

Federal funding secured for Barrow-TGen advanced technology study of Amyotrophic Lateral Sclerosis

(September 30, 2015)
Multi-year study of patients seeks biomarkers that can provide early detection and progression of Lou Gehrig's disease. Read more here.

Magnet Test Finds Cortex Overexcitable in All ALS

(September 15, 2015)
Scientists know that in people with some forms of amyotrophic lateral sclerosis, the motor cortex springs into action more often than it should. Now researchers conclude that the same occurs in people with ALS due to the C9ORF72 expansion. Read more here.

Johns Hopkins University, Cedars-Sinai and Massachusetts General Hospital Announce Groundbreaking ALS Research Project of Answer ALS

(September 9, 2015)
Today, the launch of an Amyotrophic Lateral Sclerosis research project of Answer ALS, the largest single coordinated and comprehensive effort to end ALS, was announced. Read more here.

MediciNova Announces First Advanced ALS Patient Using Non-Invasive Ventilation Support Enrolled in Phase 2 Clinical Trial of MN-166 (ibudilast)

(September 2, 2015)
MediciNova amended the protocol to expand its recruitment to include advanced ALS patients in the trial, and this amendment was approved by FDA. Read more here.

NEALS Research Ambassador, Brian Parsons, on compassionate care
(September 2, 2015)

Parsons, 49, has successfully lobbied for rights of families of terminally ill patients. Read more here.

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