ALS/MND 2012: Amyotrophic Lateral Sclerosis Database Opens for Business

This is Part 1 of a 6-part series from the International Symposium on ALS/MND. To read the full series, click here.

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,” 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 $30,000 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.

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