The ALS Therapy Alliance Awards Major Grant to Prize4Life and Northeast ALS Consortium to Launch ALS Database

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The ALS Therapy Alliance has awarded a grant to Prize4Life and the Northeast ALS Consortium in order to create a comprehensive, open-access database of ALS/Lou Gehrig’s disease clinical trial data for research purposes.

Prize4Life

"[Through the launching of the PRO-ACT database] we will have a powerful tool at our disposal to learn more about ALS, discover potential biomarkers of the disease, and conduct still unconsidered analyses of this data," said Dr. Melanie Leitner.

The ALS Therapy Alliance recently announced it would provide a grant to Prize4Life and the Northeast ALS Consortium (NEALS) to support their joint effort to create a database that will pool the results of numerous ALS clinical trials conducted over the past 15 years.

The Pooled Resource, Open-Access ALS Clinical Trials (PRO-ACT) database will be made freely available to members of the research and development community. This database, comprised of thousands of patient records, could yield numerous insights into the nature of the disease and improve future clinical trials.

“ALS trials are expensive and infrequent,” said Dr. Melanie Leitner, Chief Scientific Officer of Prize4Life. “But there are already some 10,000 existing patient records from industry, academic, and publicly funded trials. This is an enormous potential dataset, and by making this information readily accessible to researchers, we will have a powerful tool at our disposal to learn more about ALS, discover potential biomarkers of the disease, and conduct still unconsidered analyses of this data.”

Similar databases have been created for other diseases, such as the Coalition Against Major Diseases' (CAMD) initiative last year to share data from Alzheimer’s and Parkinson’s disease trials. This effort has already collected 4000 records from 11 failed Alzheimer’s trials. PRO-ACT is the culmination of broad interest in the ALS research community. As far back as 2005, Dr. Robert Brown, the Chair of Neurology at the University of Massachusetts Medical School and a member of Prize4Life’s Scientific Advisory Board, organized a meeting to explore ways to collect and widely share ALS clinical trial data.

“The PRO-ACT database is the realization of a long-held goal of the ALS research community,” said Dr. Brown. “One that will be incredibly beneficial to the study of this disease and the development of treatments. Prize4Life and NEALS have the experience, the resources, and the connections to make this database a reality.”

In 2008, NEALS made roughly 1000 patient records from ALS clinical trials available to the ALS community at large. By partnering with Prize4Life on the PRO-ACT project, this number will increase substantially, magnifying the impact of the database. Already, Prize4Life has received letters of support for the initiative from Sanofi-aventis, Teva Pharmaceuticals, Regeneron, and Novartis.

Although envisioned as a two year project, Prize4Life and its partners plan to launch a partially populated database by the end of 2011.

Prize4Life is a nonprofit organization dedicated to accelerating the discovery of treatments and a cure for ALS by using powerful incentives to attract new people and drive innovation. Prize4Life was founded in 2006 by Avi Kremer, who was diagnosed with ALS at the age of 29 while attending Harvard Business School. The organization uses incentive prizes and other programs to bring new minds and new money into the fight against ALS and focus efforts on specific outcomes that will bridge the gap between academic research and the development of treatments and a cure.

The ALS Therapy Alliance (ATA) was established in 2002 to bring together a consortium of scientists at multiple institutions to cure ALS. This represents a unique collaborative enterprise that spans single laboratories and universities. The ATA partners with corporations, biotech and pharmaceutical firms, manufacturers and the media to create awareness and raise funds for research of ALS. To date, nearly $24 million dollars has been raised to fund research for finding a cure for this devastating disease.

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