FIRST QUARTER 2016 CDISC IN THE NEWS


Find here links to the press releases CDISC has issued this quarter, as well as news about CDISC written by third parties.


CDISC to Convene eSource Stakeholders Group to Encourage Use of EHRs for Research


CDISC and One Mind Announce Availability of Research Data Standard for Traumatic Brain Injury


Data Consortium Presses for Global Standards to Spark Collaboration


CDISC Welcomes New Vice President, Standards, Terminology and Technical Services


CDISC Welcomes New Vice President, Finance As Seen in Austin Statesman —


Opinion Editorial: Cancer Moonshot Won’t Work Unless We Fix How Data Is


Shared Dr. Nicole Harmon, CDISC COO


24 March 2016 — Vice President Joe Biden has been given the daunting task of spearheading an effort to find the cure for cancer. Biden calls it a “moonshot.” Indeed, it is.


Yet, while our hearts may be in the right place, our heads


are not. While seeing all the pink on


professional athletes is nice, a color won’t save your mother. Those marathons and walks won’t save your child because the money you pony up to run or walk goes into a hungry black hole.


Here’s the truth, according to the National Institutes of Health: The U.S. government is expected to spend around $5.5 billion dollars on cancer research this year. That’s an impressive sum, but there’s no budget for a coordinated plan to make sure the left hand knows what the right hand is doing. Grants are


CDISC CDIS CDI C WEBSIT LINK WEBSITE LINK 10


awarded to researchers who don’t know what the other researchers are doing. Directly or indirectly, everyone


is affected by cancer. So, how gut-


wrenching, how inexcusable is it to know that the cure for cancer may very well be out there stuck in a researcher’s notebook somewhere, never to see the light of day, only because data is not formatted in a way that can be shared and compared.


Data are collected differently, even across centers within the National Institutes of Health. The same research is repeated year in and year out by different organizations that do not and cannot communicate or collaborate with each other. Why? Because any research these organizations perform is collected in a form that cannot be compared and shared, and is therefore siloed and frequently wasted. Therefore, accountability seems nonexistent. We simply cannot have a Moonshot for cancer without collaboration and open science. And, collaboration cannot happen when data does not speak the same language.


According the National Center for Charitable


Statistics, there are 1.5 million nonprofit organizations in the United States alone.


Logic dictates that


certainly hundreds, if not thousands of these are focused on cancer, many of them concentrating on a specific type of cancer or the organ or tissue affected. Yet, 14 million people worldwide continue to be diagnosed with cancer each year, and 8 million are expected to die from it this year alone.


We are indeed at an inflection point. Finding a cure can be done. It should be done. What we need is smarter research to unlock cures. Breakthroughs like the successful mapping of the human genome and treatments for HIV occurred when scientists and researchers collaborated. They


shared what the same collaboration. can obtaining


significantly clinical


It was


working and what wasn’t. Cancer and other diseases need


starts by first


formatting data in a common way to enable sharing. Data-sharing between


shorten the time research results and


implementing those results as better clinical care decisions.


There is hope. Standards exist for data that


researchers in more than 90 countries view as the gold standard for ensuring data synchronization. These are


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