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Welcome to the
Pooled Resource Open-Access ALS Clinical Trials Database
About Us

About PRO-ACT

The PRO-ACT (Pooled Resource Open-access ALS Clinical Trials) platform houses the largest ALS clinical trials dataset ever created. PRO-ACT contains over 8500 ALS patient records from multiple completed clinical trials. The PRO-ACT initiative merges data from existing publicly- and privately-conducted ALS clinical trials to generate an invaluable resource for accelerating discovery in the field of ALS.

Data within PRO-ACT was graciously donated by the following organizations:
Northeast ALS Consortium
Novartis
Regeneron Pharmaceuticals, Inc
Sanofi
Teva Pharmaceutical Industries, Ltd

The non-profit organization, Prize4Life, created the PRO-ACT database in partnership with the Northeast ALS Consortium and the Neurological Clinical Research Institute at Massachusetts General Hospital, and with funding from the ALS Therapy Alliance. PRO-ACT was created to provide anyone interested in moving ALS research forward quickly with a powerful tool, thus furthering our shared mission of accelerating the discovery of treatments and a cure for ALS. We thank everyone who has contributed to creation of PRO-ACT including the companies, the researchers, and most of all the ALS patients, past and present, around the world to whom the PRO-ACT initiative is dedicated.

About Prize4Life

Prize4Life is 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) by using powerful incentives to attract new people and drive innovation. Prize4Life believes that solutions to some of the biggest challenges in ALS research will require out-of-the-box thinking, and that some of the most critical discoveries may come from unlikely places. Founded in 2007 by Avi Kremer, who was diagnosed with ALS at the age of 29, Prize4Life encourages and rewards creative approaches that will yield real results for ALS patients. For more information, visit www.prize4life.il.

About Neurological Clinical Research Institute

The Neurological Clinical Research Institute (NCRI) at Massachusetts General Hospital accelerates translational research in neurological disorders through initiating and testing novel therapies. The NCRI has an extensive history in leading clinical research to find new treatments for neurological diseases including Amyotrophic Lateral Sclerosis (ALS), myasthenia gravis, diabetic neuropathy, stroke, multiple sclerosis, Parkinson’s disease, and Huntington’s disease. For more information, visit www.NCRInstitute.org.

Publications

Elizabeth D. Bacci, Dorota Staniewska, Karin S. Coyne, Stacey Boyer, Leigh Ann White, Neta Zach, Jesse M. Cedarbaum & The Pooled Resource Open-Access ALS Clinical Trials Consortium. Item response theory analysis of the AmyotrophicLateral Sclerosis Functional Rating Scale-Revisedin the Pooled Resource Open-Access ALS ClinicalTrials Database. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 2015; 1–11. Taylor & Francis online

Lunetta C, Lizio A, Melazzini MG, Maestri E, Sansone VA. Amyotrophic Lateral Sclerosis Survival Score (ALS-SS): A simple scoring system for early prediction of patient survival. Amyotroph Lateral Scler Frontotemporal Degener. 2015 Oct16:1-8

Zach N, Ennist DL, Taylor AA, Alon H, Sherman A, Kueffner R, Walker J, Sinani E, Katsovskiy I, Cudkowicz M, Leitner ML. Being PRO-ACTive: What can a Clinical Trial Database Reveal About ALS? Neurotherapeutics. 2015 12:417-23.

Ko KD, El-Ghazawi T, Kim D, Morizono H; Pooled Resource Open-Access ALS Clinical Trials Consortium. Predicting the severity of motor neuron disease progression using electronic health record data with a cloud computing Big Data approach. IEEE Symp Comput Intell Bioinforma Comput Biol Proc. 2014.

Küffner R, Zach N et al. Crowdsourced analysis of clinical trial data to predict amyotrophic lateral sclerosis progression. Nat Biotechnol. 2015 33:51-7
Also covered by:

  • Jarchum I, Jones S. DREAMing of benchmarks. Nat Biotechnol. 2015 33:49-50
  • Fournier C, Glass JD. Modeling the course of amyotrophic lateral sclerosis. Nat Biotechnol. 2015 33:45-7
  • Editor’s choice in Science Translational Medicine
  • Covered by Science News

Atassi N, Berry J, Shui A, Zach N, Sherman A, Sinani E, Walker J, Katsovskiy I, Schoenfeld D, Cudkowicz M, Leitner M. The PRO-ACT database: design, initial analyses, and predictive features. Neurology. 2014 83:1719-25.

Hothorn T, Jung HH. RandomForest4Life: a Random Forest for predicting ALS disease progression. Amyotroph Lateral Scler Frontotemporal Degener. 2014 15(5-6):444-52

Gomeni R, Fava M; Pooled Resource Open-Access ALS Clinical Trials Consortium. Amyotrophic lateral sclerosis disease progression model. Amyotroph Lateral Scler Frontotemporal Degener. 2014 15:119-29

Gomeni R. Use of predictive models in CNS diseases. Curr Opin Pharmacol. 2014 14:23-9

Sherman AV et al. Infrastructure resources for clinical research in amyotrophic lateral sclerosis. Amyotroph Lateral Scler Frontotemporal Degener. 2013 14 Suppl 1:53-61

7/24/2014 5:05:09 PM
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