Rare disease advocacy group taps Prometheus to build data assets
The Primary Ciliary Dyskinesia Foundation (PCDF) will work with Prometheus to accelerate its project to build a scalable approach to collect fragmented health data to develop actionable insights into Primary Ciliary Dyskinesia (PCD) research.
Per the agreement, Prometheus will use its clinical data platform to provide a foundation to collect, curate, repurpose, and share all data for the PCDF registry.
David Voccola, co-founder and senior consultant at Prometheus told us that the company’s data platform RexRegistry is currently being used to support data collection through participating PCD Clinical and Research Network Centers.
Voccola explained that Prometheus can support additional use cases in the future, including direct-to-patient opportunities and industry collaborations, both of which he said, “could have large impacts on clinical research.”
PCDF will evaluate the feasibility, time, costs, and functionality to make improvements before broadening the deployment of the clinical data platform across its research network.
“Well-curated and trustworthy data is essential when trying to understand how to best support a patient community like those affected by PCD: The available volume of data is relatively small, there is a potential for misdiagnosis, and there are complex data types involved,” Voccola told us.
He added, “By working hard to create data assets that sufficiently large and high quality the PCDF can provide a reusable resource that advances the entire community of stakeholders, from patients to industry.”
PCD is a rare disease characterized by chronic respiratory tract infections and abnormally positioned internal organs caused by abnormal cilia which are projections that extend from the surface of cells. Cilia are found in the linings of the airway, the reproductive system, and other organs and tissues.
Voccola stated that there is an emerging trend in rare disease in which advocacy organizations play a role in advancing clinical research through registries and collaborations with medical societies and industry.
“Industry players would likely benefit from collaborating with advocacy organizations to create pre-competitive data assets that can be used for real-world evidence generation, rather than try to individually create and maintain these datasets,” he added.
