Benefits to Data-Based Registries in ALS: James Berry, MD, MPH


The director of the Massachusetts General Hospital ALS Care Center spoke on the importance of data-based registries and how they can grow ALS research.

"If you have the data, it draws new interest, and allows people to move faster. We’ve seen a similar thing with some of the bio repositories that we have.”

As telemedicine use has grown, so has the use of shared data-based registries. These banks of data can contain research from a wide range of global studies and can act as a central foundation for future studies by identifying trial participants and building upon previous research.

One such effort tabbed by Answer ALS is its most recent campaign, “The Data is Here,” which includes the release of the world’s largest open-sourced data portal for amyotrophic lateral sclerosis (ALS). James Berry, MD, PHD, director, ALS Care Center, Massachusetts General Hospital (MGH), notes that rarer disease states that do a great job of sharing resources are the ones who have made breakthroughs.

Berry, who also serves as the program director of Answer ALS and director of the MGH Neurological Clinical Research Institute (NCRI), used cystic fibrosis as a prime example of the benefits of data collaboration. In an interview with NeurologyLive, Berry shared his thoughts on how these registries can help further research within the ALS community.

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