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Getting PRO-ACTive about ALS
January 2013
by Lloyd Dunlap  |  Email the author
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CAMBRIDGE, Mass.—Prize4Life, a nonprofit organization dedicated to accelerating discovery of treatments and a cure for amyotrophic lateral sclerosis (ALS, also known as Lou Gehrig's disease), has launched the Pooled Resource Open-Access ALS Clinical Trials (or PRO-ACT) database, said to be the largest ALS clinical trial database ever created.  
 
PRO-ACT merges data from existing publicly and privately conducted ALS clinical trials and makes these data widely available for research, creating a valuable resource for accelerating discovery in the field of ALS. Prize4Life and the Neurological Clinical Research Institute (NCRI) at Massachusetts General Hospital created the PRO-ACT database with funding from the ALS Therapy Alliance and in partnership with the Northeast ALS Consortium (NEALS). Data donations came from pharmaceutical companies including Sanofi, Novartis, Teva Pharmaceutical Industries and Regeneron Pharmaceuticals, as well as several academic institutions.  
 
"With the creation of the PRO-ACT database, Prize4Life and the NCRI have given companies like ours cause to rethink priorities and strategies regarding ALS, since the abundant clinical and patient data contained within it will help us develop viable Phase II and Phase III treatments for ALS," said Dr. Doug Kerr, medical director of neurodegeneration clinical development at Biogen Idec. The company currently has one ALS drug therapy in Phase III trials. The drug was developed with Knopp Biosciences and is described as a novel oral neuroprotective therapy.
 
 
PRO-ACT contains more than 8,500 fully de-identified, unique clinical trial patient records, including demographic, lab, medical history, functional scores and other data. 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 more than 8 million longitudinally collected data points. Prize4Life and the NCRI initiated this project with the belief that making ALS clinical trial data globally available would expedite more ALS discoveries.
 
 
"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 Dr. Melanie Leitner, chief scientific officer of Prize4Life. "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?"  
 
The course of ALS is difficult to predict. Although the average life expectancy of patients 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. One key to better predictability in the future lies in the past—ALS research will move forward when scientists are able to identify the patterns hiding in the millions of data points in PRO-ACT, which were collected from thousands of ALS patients involved in previous clinical trials.  
 
"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," says Dr. Merit Cudkowicz, director of the NCRI, neurology chief at Massachusetts General Hospital and NEALS co-chair. "Because of PRO-ACT, ALS researchers will be better able to design trials that need fewer participants."  
 
Prize4Life is a results-oriented nonprofit founded in 2006 by Avichai "Avi" Kremer, and two of his Harvard Business School classmates, with the sole purpose of finding a cure for ALS. Avi was diagnosed in 2004 at the age of 29 during his first semester at HBS. He and his friends decided to pilot an innovative new way to accelerate ALS research. The group offers substantial prizes to scientists who solve the most critical scientific problems preventing the discovery of an effective ALS treatment. The Prize4Life concept is inspired by other prize awards for stimulating research, such as the X-Prize for commercial space travel and DNA-decoding, the U.S. government's H- Prize for hydrogen renewable energy and Eli Lilly & Co.'s venture, InnoCentive.
 
Code: E011310

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