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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
2015 Annual NEALS Meeting
NEALS MEMBERS: The Annual NEALS Meeting will be held November 4 - November 6 in Clearwater Beach, FL. Please RSVP by October 28 to reserve your spot! View agenda and meeting details here.

ALSA/NEALS PALS Webinar: ALS Clinical Trial Pipeline Series - Fall 2015
(October 22, 2015)
Dr. Angela Genge, Montreal Neurological Institute and Hospital, will discuss the ALS clinical trial pipeline and answer questions about the current state of clinical research. Register 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.


Ice Bucket Challenge Benefits ALS Research at Barrow

(August 26, 2015)
Researchers at Barrow Neurological Institute have announced the launch of a novel and potentially breakthrough ALS study that is being funded in part by money raised through the challenge. Read more here.


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