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There isn't an exact roadmap to follow—this has never been done before—but what is being done is necessary to save lives and help patients thrive after transplant. Bringing data together in a timely manner accelerates research to reveal new insights and transcend scientific frontiers.
The CIBMTR has relied on a web-based model of data collection using an extensive library of forms that are filled out at intervals across a transplant patient's lifespan. Under a new model, the team has successfully brought together healthcare data standards that enable research network partners to collect and send data from their source data systems efficiently and securely. This new model, using a prototyped set of solutions, is both future-proof and sustainable because it meets the data where it resides and allows data to become interoperable.
The CIBMTR moved quickly to design and test the prototype within a pilot. In six months, four diverse transplant centers completed the pilot. The results are in and it worked!
"In my 35+ years of tenure as Chief Scientific Director of the CIBMTR, this initiative is one of the most important things we've done to position the CIBMTR to meet the research needs of our community." Mary Horowitz, MD, MS, Chief Scientific Director, CIBMTR.
Not only does the new model help accelerate research through timely data reporting, but pilot centers also reported that reducing data entry requirements should provide cost-savings through efficiencies gained under the new model. This perceived value has the potential to allow scarce healthcare resources to become directed back into patient care.
"The success achieved in this initiative to date brings the promise of translational science to patients and supports transplant centers under financial strain in reducing their administrative cost and resource burden to submit critical data for clinical research," Steven Devine, MD, Associate Scientific Director, CIBMTR and Chief Medical Officer, NMDP/Be The Match.
Thank you to the transplant centers who have submitted data to the CIBMTR under this new model:
Through collaboration and determination, the learnings from the pilot have helped pave the future for a new era of clinical registry reporting, and the ability to scale this to the CIBMTR network more quickly and efficiently.
IQVIA brought their expertise and extensive resources to help design and create a customized solution aligned with the vision of the initiative to optimize data acquisition for the CIBMTR. This solution allows centers to be in control of every aspect of the process with incremental value to the centers as new functionality becomes enabled.
If you are interested in learning more about this transformational work, and how your center may become involved, please contact us at DT@nmdp.org.
The CIBMTR proudly announces seven Pilot Partner Sites readying to test new methods of sending data electronically to the CIBMTR with the goal of reducing the administrative burden for centers to submit their data to the CIBMTR.
Four guiding principles were applied when designing the prototype to send data electronically to the CIBMTR:
"July will be a critical month for DTI; the prototype will begin testing at the site level in lower environments. This is where all our work to date comes together," said Kristina Bloomquist, DTI's Business Lead.
"We are encouraged by the interests expressed by sites to be pioneers in re-thinking how we exchange data so that we can reduce the administrative burden to collect and send data to CIBMTR," said Bridget Wakaruk, DTI's Senior Relationship Manager.
To date, Pilot Partner Sites prepared to begin prototype testing include:
Many transplant centers have expressed a preference to stay knowledgeable of the initiative's progress and plans. In response, a DTI Community group has been established. The group meets monthly with the aim to provide relevant updates on the initiative, educate about technical aspects of the new model, and foster a community environment in which to exchange information and ideas helping to inform future decisions for both transplant centers and DTI.
The CIBMTR Data Transformation Initiative will focus initially on new methods for data collection. The Initiative's vision is to optimize the acquisition and utilization of entrusted data assets to accelerate breakthroughs that transform patient experiences. The CIBMTR has partnered with IQVIA, a company known worldwide for its expertise in building technology solutions customized for research networks engaged in complex data exchange. The CIBMTR will continue to own all data and the resulting new data ecosystem and technical solutions developed.
Work is already underway to inform the design and development of a prototype for data acquisition that will enable a "source to target" approach using electronic data capture for data that does not require clinical interpretation. The CIBMTR will pilot the prototype with a few initial sites and evaluate its performance together with the sites to inform future expansion of the prototype. Pilot partner sites for this work are currently being assessed as candidates for the pilot. The initiative will strive to identify as many as five sites that can install the prototype beginning in April for initial testing. Sites selected will represent the diversity of technology systems that comprise the network to ensure development work will be applicable for all sites in the future.
IQVIA is a leading global provider of information, innovative technology solutions, and contract research services focused on helping healthcare clients find better solutions for patients. Formed through the merger of IMS Health and Quintiles, IQVIA applies human data science — leveraging the analytic rigor and clarity of data science to the ever-expanding scope of human science — to enable companies to reimagine and develop new approaches to clinical development and commercialization, speed innovation, and accelerate improvements in healthcare outcomes. Powered by the IQVIA CORE™, IQVIA delivers unique and actionable insights at the intersection of large-scale analytics, transformative technology, and extensive domain expertise as well as execution capabilities. With more than 55,000 employees, IQVIA conducts operations in more than 100 countries. To learn more, visit www.IQVIA.com.