Read a PDF of the entire series.

7 December 2012. Data miners: Start your search engines. The largest collection of data from clinical trials in amyotrophic lateral sclerosis (ALS)—representing more than 8,500 individuals—is now live. Prize4Life, a Cambridge, Massachusetts, nonprofit working to speed up drug discovery for motor neuron disease (MND), announced the launch of the Pooled Resource Open-Access ALS Clinical Trials (PRO-ACT) database on 5 December 2012 at the International Symposium on ALS/MND in Chicago, Illinois. Prize4Life, which funds this reporter’s position at Alzforum, developed the database in conjunction with the Neurological Clinical Research Institute at Massachusetts General Hospital in Boston.

The organizers of 18 Phase 2 or 3 trials for ALS offered up data. Contributors include Sanofi of Paris, France; Regeneron, headquartered in Tarrytown, New York; Teva Pharmaceuticals in Petah Tikva, Israel; and Novartis, based in Basel, Switzerland. Most of the longitudinal data, from both placebo and treatment participants, spans about a year, said Melanie Leitner of Prize4Life. However, it’s been thoroughly scrubbed of identifying information, down to the particular treatment provided, to protect the anonymity of the participants and proprietary interests. The database includes several elements such as medical history and lab results. Over time, the organizers plan to add other features, for example, adverse events and the approximate date of the trial, Leitner said.

What veins of informational ore might data miners tap? With the right strategies, researchers might discover factors that influence disease progression, said Leitner. She anticipates researchers may hunt for subsets of people who responded to treatment, even when a trial failed overall. “You cannot do that unless you have a huge number of data points,” she said. Should researchers find evidence of an effective treatment, they could contact Prize4Life to find out which drugs subjects received, Leitner said.

An abbreviated PRO-ACT database has already yielded a few gems. Prize4Life offered researchers access to about a quarter of the information represented in the final database and asked them to sift out predictors of a slow or rapid disease progression. The organization gave out $50,000 in November for algorithms that explained about half of the variability among people with ALS (see ARF related news story). Understanding the progression of ALS better can help researchers streamline clinical trials, reducing subject numbers and costs.—Amber Dance.


  1. As foundries were the drivers of the industrial revolution, databases are the drivers of the information revolution. Some of these legacy databases provide details on the course of ALS for those patients eligible for clinical trials, and who were therefore less impacted by the disease process. The databases will provide a real-time foundation for modeling the early stages of ALS. As with some of the insights derived from databases in cancer and other diseases, such as cystic fibrosis, there will emerge a set of benchmarks to be achieved and improved upon as we forge ahead with developing better treatment for patients with ALS.

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News Citations

  1. Contest Winners Offer Solutions for Tracking ALS

Other Citations

  1. Read a PDF of the entire series.

External Citations

  1. Prize4Life
  2. Pooled Resource Open-Access ALS Clinical Trials (PRO-ACT) database
  3. International Symposium on ALS/MND

Further Reading


  1. . Cognitive decline and reduced survival in C9orf72 expansion frontotemporal degeneration and amyotrophic lateral sclerosis. J Neurol Neurosurg Psychiatry. 2013 Feb;84(2):163-9. PubMed.
  2. . Proteome analysis of body fluids for amyotrophic lateral sclerosis biomarker discovery. Proteomics Clin Appl. 2013 Jan;7(1-2):123-35. PubMed.
  3. . Review of selected databases of longitudinal aging studies. Alzheimers Dement. 2012 Nov;8(6):584-9. PubMed.