Northeast Amyotrophic Lateral Sclerosis Consortium (NEALS)
Research Areas
At a Glance
- Status: Active Consortium
- Year Launched: 1995
- Initiating Organization: NEALS
- Initiator Type: Nonprofit foundation
- Rare disease
- Disease focus:
Als - Location: International
Abstract
The Northeast Amyotrophic Lateral Sclerosis Consortium (NEALS) brings together researchers who collaboratively conduct clinical research in amyotrophic lateral sclerosis (ALS) and other motor neuron diseases (MNDs).
Mission
The mission of NEALS is to translate scientific advances into new treatments for people with ALS and MNDs as rapidly as possible.
NEALS functions as an academic research consortium, a contract research organization, and a resource tool for the ALS community.
Consortium History
1995: NEALS was formed by nine investigators in the New England area who wanted to develop new clinical research opportunities for patients with ALS.
1995: The clinical trial of Topiramate in ALS became the first NEALS-affiliated ALS trial.
2001: NEALS held its first Annual Meeting to review developments in ALS research, discuss potential new therapies, and prepare research sites for new clinical trials in ALS.
2007: NEALS formed a shared sample repository with samples collected by NEALS members during their clinical research efforts. The samples were made widely available to ALS investigators around the world.
2010: NEALS was thrilled to announce that two NEALS-affiliated, Phase II trials had positive results. The trial sponsors continued on to perform late-stage trials in ALS.
2010: NEALS began to address the clinical research needs of other rare MNDs, including primary lateral sclerosis and hereditary spastic paraplegia. NEALS is working to develop new clinical research efforts in these diseases using the NEALS model of scientific collaboration.
2011: With the help of the ALS Therapy Alliance and the ALS Association, NEALS started new efforts to improve patient access to clinical research information, including launching a new website devoted largely to this cause.
Structure & Governance
NEALS members, or “sites,” are medical institutions equipped to perform clinical trials in ALS and MNDs. Despite its name, NEALS is an international group with more than 100 member sites in North America, Ireland, and Israel. Each member site is required to:
Financing
Donations to NEALS are used to support ongoing therapeutic clinical trials, assist in the development of new clinical trials, and support other research in ALS and other MDS. NEALS also collects an administrative fee of $1,000 at the time an application for access to the sample repository of serum, plasma, cerebrospinal fluid (CSF), whole blood, extracted deoxyribonucleic acid (DNA), and urine samples from NEALS and the Massachusetts General Hospital Neurological Clinical Research Institute (NCRI) research studies of ALS and MND is submitted, in order to offset processing costs.
Data Sharing
Sharing scientific resources is crucial to finding a cure. Over time NEALS has built an extensive ALS sample repository and maintained several trial databases. In the spirit of collaboration, it makes its resources widely available to investigators conducting research in ALS. NEALS and NCRI have a repository of serum, plasma, CSF, whole blood, extracted DNA, and urine samples from NEALS and NCRI research studies of ALS and MND. The repository is partially funded by the ALS Association, and samples from this repository are available to researchers for the purpose of furthering the understanding of ALS or MND and developing disease biomarkers.
NEALS maintains and makes available the de-identified data from its trials, when possible. Currently NEALS has six ALS trial databases available for researchers to mine:
Links/Social Media Feed
Homepage |
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https://www.linkedin.com/groups?home=&gid=4376686&trk=groups_about-h-logo |
Points of Contact
Clinical Trial Liaison
phone: 877-458-0631
email: alstrials@partners.org
NEALS Resources, Members, & Annual Meeting Questions
Tara Lincoln
NEALS Program Manager
phone: 617-724-7398
email: tlincoln@partners.org
Mailing Address
The Northeast ALS Consortium
Attn: Tara Lincoln
50 Staniford St. 4th Floor
Rm 401I
Boston, MA 02114
Sponsors & Partners
Albany Medical Center |
Barrow Neurological Institute |
Baylor College of Medicine |
Baystate Medical Center |
Beth Israel Deaconess Medical Center |
Beth Israel Medical Center Albert Einstein College-New York |
Boston University School of Medicine |
Brigham and Women’s Hospital |
Bryan LGH Medical Center |
California Pacific Medical Center |
Carolinas Medical Center |
Cedars-Sinai Medical Center |
Center for Neurologic Study |
Cleveland Clinic |
Columbia University Medical Center |
Cornell University |
Crestwood Medical Center |
Dartmouth-Hitchcock Medical Center |
Dean Health System |
Drexel University College of Medicine |
Duke University |
Emory University |
Florida State University, Sarasota Memorial Hospital |
George Washington University |
Georgetown University Medical Center |
Georgia Regents University |
Hadassah Medical Center |
Hampton Roads Neurology |
Harvard School of Public Health |
Hennepin County Medical |
Henry Ford Hospital/Case Western Reserve |
Hospital for Special Care |
Indiana University |
Instituto Tecnologico y de Estudio Superiores doe Monterrey – Monterrey, Mexico |
Jim “Catfish” Hunter ALS Clinic |
Johns Hopkins |
Lahey Clinic, Curt and Shonda Schilling ALS Clinic |
Massachusetts General Hospital |
Mayo Clinic, Florida |
McGill University |
Medical College of Wisconsin |
Medical University of South Carolina |
Mercy Health Saint Mary’s/Michigan State University |
Methodist Neurological Institute |
National Institute of Health |
Ohio State University |
Oregon Health & Science University |
Our Lady Lourdes Regional Medical Center |
Penn State Hershey |
Phoenix Neurological Associates |
Providence ALS Center |
Rhode Island Hospital, Brown University |
Robert Wood Johnson Medical School |
Sentara Medical Group |
South Shore Neurologic |
St. Louis University |
Stanford University |
SUNY at Stony Brook |
SUNY Upstate Medical University |
Tel-Aviv Medical Center |
Texas A&M |
Texas Neurology |
Trinity College Dublin, Beaumont Hospital |
University of Arizona |
University of Arizona Medical Center |
University of Arkansas |
University of British Columbia |
University of Calgary |
University of California San Francisco, Fresno |
University of California, Irvine |
University of California, Los Angeles |
University of California, San Diego |
University of California, San Francisco |
University of Chicago |
University of Colorado |
University of Florida, Jacksonville |
University of Illinois, Chicago |
University of Iowa Hospitals and Clinics |
University of Kansas Medical Center |
University of Kentucky |
University of Maryland School of Medicine |
University of Massachusetts Medical Center |
University of Miami |
University of Michigan |
University of Montreal Health Centre |
University of Nebraska Medical Center |
University of Nevada School of Medicine |
University of New Mexico |
University of Pennsylvania |
University of Pittsburgh |
University of Puerto Rico |
University of Rochester |
University of South Florida, College of Medicine |
University of Southern California |
University of Texas Health Science Center, San Antonio |
University of Texas, Southwestern Medical Center, Dallas |
University of Toronto |
University of Utah |
University of Vermont |
University of Virginia |
University of Washington |
University of Western Ontario-London Health Sciences Center |
Vanderbilt University Medical Center |
Virginia Mason Medical Center |
Wake Forest University School of Medicine |
Washington University in St. Louis |
Wayne State University School of Medicine |
West Virginia University School of Medicine |
Wilmington Health Associates |
Yale University School of Medicine |