A Culture Shift
“The breakthrough of NeuroBANK,” he says, “is that it changes the clinical research culture.” An understanding across the medical industry, he posits, that big data are not a scary thing, and that openly sharing patient data and information, certainly without compromising patients’ privacy, can lead to potentially life-saving advances.

He references PRO-ACT, a shared database he created in 2011 in partnership with Prize4Life, an Israeli non-profit, and the NEALS ALS Consortium. Numerous biotech and pharmaceutical companies and academic institutions contributed to the initiative, resulting in nearly 11,000 de-identified subject records from past clinical trials—data that would otherwise normally sit with a company and not be accessible to researchers. It was then and remains the largest clinical ALS data set in the world.
After sharing these data across the globe, analysts created algorithms that can successfully predict ALS disease progression. In fact, one predictive model proved so accurate it is under consideration for use in clinical trials to reduce sample size and speed up the drug-approval process.

While Sherman is proud of those results and the fact that nearly all companies interested in ALS research download this data set and compare the subject population in their trials to the set, he is equally if not more thrilled that those companies that initially just utilized the data are committed, once a new trial is completed, to contribute their data sets to PRO-ACT, —meaning availability of more data for future analyses that may benefit the patients.

That’s the sea change he wants to support, the true power of big data.
“My team of extremely talented and dedicated individuals,” he says, “comes up with new ways to bring collaborators together and new tools to support such collaborations.”

In this way, the NCRI and Sherman are master organizers, gathering stakeholders to form disease-specific research consortia; wrangling data by building novel systems that can compile and interpret unprecedented amounts of patient information; and then, in strategic fashion, disseminating that information to the medical community at large. Well, not just medical, but to anyone who has the skills and the grudge against the disease.

Nine research networks that investigate various diseases, from vascular cognitive impairment disease to such rare conditions as X-linked Adrenoleukodystrophy, Canavan, and Late-Onset Tay-Sachs, now use or plan to use the same ALS approach and NCRI’s platforms.

Being in the business of creating disease consortia, data aggregation and analyses, and serving as an Academic Contract Research Organization that conducts academia-, foundations- and industry-sponsored clinical trials, the NCRI will gladly share their ideas, approaches, policies, and platforms within the department, Mass General, and beyond.

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