Thoughts on Sessions at the Partnering for Cures 2014 Conference
From the CDISC International Interchange and Friday’s CFAST Face-to-Face meeting, Rhonda Facile and I took trains to New York City to attend the annual FasterCures “Partnering for Cures (P4C) Conference” where a number of our partners and colleagues were presenting, including Dr. Michel Goldman of the Innovative Medicines Initiative (IMI) and Dr. Martha Brumfield from the Critical Path Institute (C-Path). (Dr. Brumfield had also presented at the CDISC Interchange and Dr. Goldman spoke at a previous European CDISC Interchange in Germany). Before I left Washington, DC for this meeting, I met with leaders from the American Medical Informatics Association (AMIA), which was holding its Annual meeting at the same time.
I confess that, while I listened to the panels at P4C, I could not help wishing that there could be a bridge between these two organizations and areas of focus. Perhaps that is CDISC? One conference was very focused on the patient perspective and finding new cures rapidly, with several presentations by patients and relatives with a theme of “Time = Lives.” The other group is very focused on what can be done in medicine and healthcare through informatics. For my presentation at the CDISC Interchange, I tried to find examples of how data standards and informatics can directly impact patients. It seems that this leap is sometimes too big to describe and measure, but we are getting closer with our work on the Ebola and Malaria research case report forms, database development to ensure that the data collected can be readily aggregated, as well as the work of C-Path in creating aggregated databases using CDISC standards in other therapeutic areas such as Alzheimer’s disease and Multiple Sclerosis.
An example shared at the P4C meeting was indeed by a representative of the Multiple Sclerosis Society. One of his slides showed what the MS Society has done, working with C-Path, in terms of creating “CDISC (international) data standards, based initially on the NIH/NINDS MS CDEs (common data elements – which are not global standards), with a goal to create a new measure for MS progression.” On another slide, he addressed the question: “What is unique about this approach?” Answer: “We took a Consortium approach, developed tools for the community, developed data standards (CDISC), re-used shared data” and he commented that they ensured the approach was global.
In another P4C panel discussion, there was a comment that struck me that came from a patient with Type 1 Diabetes, and made me think about what we can do to streamline research for the future and where standards fit. This patient said that she wears a 24-hour glucose monitor yet when she enrolled in a clinical research study, she was asked to write down on a paper diary her glucose level at certain
Strength through Collaboration
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