The National Radiation Oncology Registry (NROR) pilot program will serve as the basis for the creation of a nationwide electronic registry to capture reliable, population-based information on radiation treatment delivery and health outcomes and will be supported by an innovative information technology (IT) infrastructure that will maximize efficiency through the automated collection and electronic transfer of data, according to research presented at the American Society for Clinical Oncology (ASCO) Quality Care Symposium.
The NROR is an original electronic infrastructure designed to collect standardized information to inform ongoing quality patient care decisions. The collected information includes facility characteristics, physician and patient demographics, treatments and physician- and patient-reported outcomes for patients in the United States receiving radiotherapy cancer treatment. A stakeholder forum comprised of physicians, patient advocacy leaders, cancer survivors, health care society leaders, industry leaders, government agency principals and private payers held in April demonstrated the interest and need for a registry of this type that contains information on patient-centered outcomes with a minimal data burden and access to data in existing registries.
"Broad buy-in from multiple stakeholders and maximal connectivity is vital for the NROR as it collects real-world, real-time data to inform quality improvement initiatives and meaningful benchmarking for our field," said Jason A. Efstathiou, MD, DPhil, lead author of the "NROR: The Pilot Prostate Cancer Registry" poster and assistant professor of radiation oncology at Massachusetts General Hospital in Boston.
The pilot phase of the NROR will focus on patients with prostate cancer (PCa). Roughly 30 clinical centers will be selected to participate as pilot sites in an objective and blinded process from the more than 80 that expressed interest in participating. The success of the pilot program will provide the framework for expansion of the NROR for the benefit of patients, clinicians, researchers, payers, device manufacturers and policy makers nationwide.
The IT infrastructure is in development to support the efficient collection, aggregation and analysis of data relevant to patients in the United States. The data dictionary based on national standards and controlled vocabularies to facilitate data integration has already been completed. The overall performance and usability of the technical system will greatly contribute to the success of the pilot registry.
"By enabling automatic aggregation of data on thousands of patients undergoing radiation directly from our hospital- and clinic-based electronic medical records systems, we can identify those procedures and processes that are associated with successful radiation outcomes to increase cure rates and decrease treatment toxicity globally, not just at selected centers," said Christopher Rose, MD, FASTRO, co-chairman of the NROR Executive Committee.
The NROR, a national health care operations initiative for quality assessment and improvement, ultimately will gather population-based information on radiotherapy delivery and patient outcomes. The NROR will serve as a valuable resource for patients, clinicians, payers, policy makers and other health care providers.
The "NROR: The Pilot Prostate Cancer Registry" and the "Developing an IT Infrastructure for the National Radiation Oncology Registry" posters will be presented on Saturday, December 1 at 7:00 a.m. Pacific time. In addition, Dr. Efstathiou will discuss the NROR pilot during the "Oral Abstract B" session on Saturday, December 1 at 11:45 a.m. Pacific time.
Massachusetts General Hospital in Boston