NIH grant will help launch the ALL ALS research consortium

Barrow Neurological Institute receives $16.7M to coordinate repository of clinical data

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by Patricia Inácio, PhD |

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The Barrow Neurological Institute has received $16.7 million from the National Institutes of Health (NIH) to help coordinate a nationwide repository of clinical data of people with amyotrophic lateral sclerosis (ALS).

The Access for All in ALS (ALL ALS) Consortium will serve as a repository of biological samples and clinical data acquired across time from ALS patients and people at risk of developing the condition, as well as healthy people acting as controls. Data will be collected in in-person and remote visits, and will be made available to scientists worldwide via a centralized portal.

The hope is that the data helps scientists gain a greater understanding of ALS and develop better, more effective treatments for the progressive neurodegenerative condition.

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“Time is of the essence for patients with ALS and we are working to identify new and effective approaches to develop and test new treatments quickly,” Robert Bowser, PhD, chief scientific officer at Barrow and one of the researchers leading the consortium, said in a press release.

“It’s my hope the Access for All in ALS Consortium will lead us to potentially groundbreaking ALS discoveries and treatments that will extend the quality of life for those living with ALS,” Bowser added.

The new consortium will have 34 clinical sites across the U.S. and Puerto Rico. There will be two coordinating centers, each handling half the sites: the ALL ALS West Clinical Coordinating Center at the Barrow Neurological Institute, in Phoenix, Arizona, and the ALL ALS East Clinical Coordinating Center, located at the Massachusetts General Hospital (MGH)’s Neurological Clinical Research Institute, in Boston.

ALS research consortium personnel

Neurologist Jeremy Shefner, MD, PhD, chief medical officer of Clinical Research at Barrow is one of the lead researchers of the consortium. His team will be responsible for site monitoring activities and training of clinical outcomes for all clinical sites in the consortium.

In addition to Bowser and Shefner at Barrow, other principal investigators of the consortium include: Suma Babu, James Berry, MD, and Sabrina Paganoni, MD, PhD, from the Sean M. Healey & AMG Center for ALS at MGH; Jinsy Andrews, MD, Matthew Harms, MD, Neil Shneider, MD, PhD, Hemali Phatnani, PhD, and Frank Provenzano, PhD, from Columbia University; and Brent Harris, MD, PhD, from Georgetown University.

The funding for the consortium was made possible by the Accelerating Access to Critical Therapies for ALS (ACT for ALS) Act, according to a press release from the Healey Center.

“Barrow Neurological Institute is honored to be selected by the NIH to help coordinate this important research consortium,” Bowser said. “By studying patient-derived biosamples from diverse ALS cohorts, we hope to accelerate the development of effective new drugs to extend life for people living with ALS.”