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Freely Available ALS Database Launched Today

By Bio-IT World Staff 

December 5, 2012 | A new patient database launched today containing clinical trial records from more than 8,500 ALS patients.  

The PRO-ACT (Pooled Resource Open-Access ALS Clinical Trials) database was launched by Prize4Life, a nonprofit organization whose mission is to accelerate the discovery of treatments and a cure for ALS (Amyotrophic Lateral Sclerosis, also known as Lou Gehrig’s disease), along with the Neurological Clinical Research Institute (NCRI) at Massachusetts General Hospital. Funding was provided by the ALS Therapy Alliance and in partnership with the Northeast ALS Consortium (NEALS).  

The records in the database came from pharmaceutical companies including Sanofi, Novartis, Teva Pharmaceutical Industries, and Regeneron Pharmaceuticals, as well as academic institutions around the world. Records include demographic, lab, medical history, functional scores, and other data elements.  The dataset currently includes both placebo and, in most instances, treatment-arm data from 18 late stage (Phase II/III) ALS clinical trials, resulting in over eight million longitudinally collected data points.  

“The vision for PRO-ACT is that the ALS community and other interested researchers around the world will have access to enough data to answer previously unanswerable basic questions, such as, how much does ALS differ between men and women,” said Prize4Life’s Chief Scientific Officer, Melanie Leitner, in a statement. “PRO-ACT will also help to answer more complicated questions, such as, can we identify subgroups of people who may actually have responded to treatment in any of the completed trials.” 

Although the average life expectancy of an ALS patient is about three years, some people live for decades, while others succumb within months. This lack of predictability makes the design of clinical trials for potential new treatments a long, costly and complex process.  

"As clinicians who see ALS patients every day, we recognize the huge potential impact of having access to vastly more patient data than anyone has ever had before.  As just one example, being able to identify factors that determine the rate of progression in people with ALS will allow us to improve clinical trial design,” said Dr. Merit Cudkowicz, Director of the NCRI, Neurology Chief at Massachusetts General Hospital and NEALS Co-Chair in a statement.  “Because of PRO-ACT, ALS researchers will be better able to design trials that need fewer participants." 

The PRO-ACT database is freely accessible to the global research community for analysis and downloads as of today at 

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