NEW HAVEN, Conn., Aug. 21, 2019 /PRNewswire/ — The Primary Ciliary Dyskinesia Foundation (PCDF) has engaged Prometheus Research to deliver the informatics expertise and core technology that will empower the PCDF to accelerate its mission to advance research, diagnosis, care, and ultimately, find a cure for PCD.
“We chose Prometheus Research because they understand the real-world challenges of building a scalable approach to collect fragmented health data and transform it into actionable insights,” said Carey Kauffman, PCDF Patient Registry Director. “We see our registry as a discovery ecosystem where patients, researchers, providers, and industry can share information and work together to create a better future.”
Prometheus’ comprehensive clinical data platform will provide the foundation to securely collect, curate, repurpose, and share all data for the PCDF Registry (PCDFR). The PCDR recognizes the value in the existing datasets and Prometheus will allow them to take full advantage of the data. The first stage is a pilot that is focused on collecting clinical data from PCD patients at five sites within the PCDF’s growing Clinical and Research Centers Network (CRCN), which include top academic pulmonary care sites in the United States and Canada. The pilot, which is being demonstrated at the PCD on the Move! Scientific Conference this week in Minneapolis, MN, will allow the PCDF to evaluate the feasibility, time, costs and functionality to make improvements needed prior to broader deployment across the CRCN.
“Our passion for data quality and deep human health research expertise make us a natural fit to enable the PCDF’s efforts,” said William Lawrence, VP of Sales and Marketing at Prometheus. “It’s impossible to remain neutral when working with the PCDF and I share their passion. Dedicated people who are directly impacted by PCD—parents, brothers, sisters, and patients themselves—run the Foundation. Prometheus is privileged to support their vision of a world where PCD is a curable condition.”
The PCD Foundation
As a patient-focused organization, PCDF’s goal is to provide the leadership and resources needed to support increased research, accelerated diagnosis, improved health and, ultimately, a cure for primary ciliary dyskinesia. For more information, please visit https://pcdfoundation.org
Prometheus Research is the principal informatics partner to renowned health organizations engaged in ambitious translational research endeavors and quality improvement initiatives. Our RexRegistry agile data platform empowers our partners to improve healthcare performance, accelerate scientific discovery, and increase patient access to new treatments and therapies. Prometheus helps forward-thinking institutions build data assets that will continue advancing the state of care for generations to come.
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SOURCE Prometheus Research