Northeast Amyotrophic Lateral Sclerosis Consortium (NEALS)


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:

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


Last Updated: 04/08/2016

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