The first test of the “communicator” was done during a data transfer for the Sickle Cell Disease Data Hub under development by the ASH RC. This data repository will eventually allow the ASH RC to pool data from multiple national sources and make it available for query by institutions and investigators in search of new insights to address the burden of sickle cell disease.

“It’s exciting that the ASH RC Sickle Cell Data Hub will serve as the home for clinical information that’s been transformed from one data standard to another through this innovative process,” said Roy Silverstein, MD, of Medical College of Wisconsin, who serves as president of the ASH RC as well as president of the American Society of Hematology. “This tool represents an important technical milestone that allows us to unlock not only data to address the burden of sickle cell disease, but data on many other conditions stored in the PCORI format to help advance research in other areas as well.”

“The CHIP team is working closely with the Prometheus team on this effort. We are proud to contribute to the advancement of secure communications between multi standard-based networks,” said Al’ona Furmanchuk, PhD, Northwestern Research Assistant Professor with the Center for Health Information Partnerships (CHIP) and Northwestern Principal Investigator (PI) on the project. Dr. Furmanchuk continued, “Ultimately, ‘communicators’ like this will open up the possibility of designing platform-free epidemiological studies using electronic medical records.”

“Helping to facilitate and improve upon the use of modern health data standards is central to the technical mission of the ASH RC Data Hub,” added David Voccola, Co-founder of Prometheus Research. “This collaborative endeavor will not only enhance the Data Hub’s ability to bring together disparate information from across the sickle cell community, but will also deliver interoperability benefits that are generalizable to a wide variety of healthcare and research scenarios.”

The next step is to implement and test the “communicator” within the Chicago Area Patient-Centered Outcomes Research Network (CAPriCORN). Later it can be fine-tuned according to the specific needs of other data registries and the intricacies of legal regulations. “CAPriCORN is excited to pilot innovative methods for executing research projects and data sharing in real time,” said Dr. Abel Kho, Director of CHIP and PI of CAPriCORN.

About the ASH Research Collaborative

The ASH Research Collaborative (ASH RC) is a non-profit organization established by the American Society of Hematology (ASH) to improve the lives of people affected by blood diseases by fostering collaborative partnerships to accelerate progress in hematology. The foundation of the ASH RC is its Data Hub, a technology platform that facilitates the exchange of information by aggregating in one place, and making available for inquiry, research-grade data on hematologic diseases. The first research initiative of the ASH RC is a Sickle Cell Disease (SCD) Clinical Trials Network (CTN), which launched in 2019, with the goal of optimizing the conduct of clinical trials research in SCD and leverages the Data Hub to collect key information and identify gaps to advance SCD research and treatment.

About the Chicago Area Patient-Centered Outcomes Research Network

The Chicago Area Patient-Centered Outcomes Research Network (CAPriCORN), a Clinical Data Research Network within PCORnet ( is a partnership of research institutions, clinicians, patients and patient advocates representing over 8 million individuals in the Chicagoland region. The CAPriCORN mission is to develop, test, and implement policies and programs that will improve health care quality, health outcomes, and health equity for the richly diverse populations of the metropolitan Chicago region and beyond.

About the Center for Health Information Partnerships

The Center for Health Information Partnerships (CHIP, serves a mission to bring people, communities, and data together to drive measurable and sustained improvement in health. Since 2010, CHIP has worked with partners to strengthen the use of health information technology and improve access to health data. CHIP is part of the Institute for Public Health and Medicine based at Northwestern University Feinberg School of Medicine.

About Prometheus Research

Prometheus Research ( is the principal informatics partner to renowned health organizations engaged in ambitious translational research endeavors and quality improvement initiatives. Its agile data platform, RexRegistry, empowers organizations to acquire, integrate, and repurpose disparate sources of data to improve health outcomes, facilitate scientific discovery, and accelerate patient access to new therapies. Together with its expert consulting services, Prometheus helps forward-thinking institutions build data assets today that can advance the state of care for years to come.


Eva Winckler