First Participant Enrolled in NIH-Funded Access for All in ALS Consortium

BOSTON- The Access for All in ALS Consortium (ALL ALS) announced the successful enrollment of the first participant.

Established in the autumn of 2023 with funding from the National Institutes of Health (NIH), ALL ALS is a multi-institutional effort, and aims to disrupt the ALS clinical research landscape using open science methods to build broadly accessible resources to advance ALS research. The consortium brings together research scientists from across the country, combining their efforts to collect clinical and biomarker data from people with ALS symptoms, asymptomatic individuals at risk of developing inherited forms of ALS, and control participants. The ALL ALS clinical and genomic data and biofluid collections will help researchers investigate the antecedents of ALS, its onset, progression, prognostication, and response to effective therapies.

“We are thrilled to have reached this critical milestone for the ALL ALS Consortium,” said James Berry, M.D., M.P.H., Director of the Neurological Clinical Research Institute (NCRI) at Massachusetts General Hospital (MGH). “The enrollment of this first participant signifies the beginning of what will be a monumental step forward for ALS research.”

The MGH NCRI is the ALL ALS East Clinical Coordinating Center, one of two clinical coordinating centers in the U.S. The West Clinical Coordinating Center is located at Barrow Neurological Institute in Phoenix, AZ. Both centers are leaders for ALS biobanking and national and international clinical trials like the HEALEY ALS Platform Trial for ALS. Together, they oversee 35 clinical study sites across the continental U.S. and Puerto Rico.  

“We have remarkable teams at both Coordinating Centers that together have worked incredibly hard to enable the enrollment of our first participant.” said Robert Bowser, Ph.D., Chief Scientific Officer and Director of the Gregory W. Fulton ALS Research Center at the Barrow Neurological Institute. “We have tremendous partnerships with the NIH and AMP ALS, and look forward to working with the dedicated research teams at each of the 35 clinical centers to expand ALL ALS enrollment throughout the country.  We are thankful for the support from the ALS community and people with lived experience of ALS”.

If you are interested in learning more about this study, please contact: ALLALS_Info@dignityhealth.org

The ALL-ALS Consortium is funded by the National Institutes of Health: OT2NS136939 and OT2NS136938.

Background on ALS

Amyotrophic lateral sclerosis (ALS) is the most prevalent adult-onset progressive motor neuron disease, affecting approximately 30,000 people in the U.S. and an estimated 500,000 people worldwide. ALS causes the progressive degeneration of motor neurons, resulting in muscle weakness and atrophy. There is an urgent need to understand the biology of ALS and to develop effective therapies.

About the Sean M. Healey & AMG Center for ALS at Mass General

At the Sean M. Healey & AMG Center for ALS at Mass General, we are committed to bringing together a global network of scientists, physicians, nurses, foundations, federal agencies, and people living with ALS, their loved ones, and caregivers to accelerate the pace of ALS therapy discovery and development.

Launched in November 2018, the Healey & AMG Center, under the leadership of Merit Cudkowicz, MD and a Science Advisory Council of international experts, is reimagining how to develop and test the most promising therapies to treat the disease, identify cures and ultimately prevent it.

With dozens of active clinical trials and lab-based research studies in progress right now, we are ushering in a new phase of ALS treatment and care. Together, we will find the cures.

About Barrow Neurological Institute

Barrow Neurological Institute, located at Dignity Health St. Joseph's Hospital and Medical Center in Phoenix, is an international leader in treatment, research and education relating to brain and spinal diseases and injuries. The Institute is one of the busiest centers for neurology and neurosurgery in the United States. Each year, more than 77,000 patients are treated at Barrow with more than 5,000 neurosurgeries performed at the Institute. Because of its high volume, Barrow clinicians are familiar with the rarest and most challenging neurological conditions and are often sought by patients from around the world for life-saving medical care. 

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