1. National Radiation Oncology Registry: The pilot prostate cancer registry
- Author
-
Howard M. Sandler, Justin E. Bekelman, Deborah S. Nassif, Colleen A. Lawton, Christopher M. Rose, Ronald C. Chen, Jason A. Efstathiou, Louis Potters, Jeff M. Michalski, W. Warren Suh, Terry Wall, Deborah A. Kuban, Anthony L. Zietman, and Karen E. Hoffman
- Subjects
Cancer Research ,medicine.medical_specialty ,business.industry ,Alternative medicine ,Stakeholder engagement ,Data dictionary ,medicine.disease ,Prostate cancer ,Health services ,Oncology ,Aggregate analysis ,Radiation oncology ,medicine ,Medical emergency ,business - Abstract
267 Background: The National Radiation Oncology Registry (NROR), sponsored by the Radiation Oncology Institute and the American Society for Radiation Oncology, is building a nationwide electronic infrastructure to collect standardized information on cancer care delivery among patients treated with radiotherapy in the United States. The NROR pilot registry will focus on patients with prostate cancer (PCa). Methods: Since October 2010 the NROR has undertaken four main efforts (1) stakeholder engagement, including hosting a forum with ongoing opportunities for feedback from patients, clinicians, payers, vendors, and federal agencies; (2) electronic infrastructure development to facilitate transfer of information from disparate clinical systems to a database model designed for efficient aggregate analysis; (3) data dictionary development with guidance from PCa and technical experts, and health services researchers; and (4) pilot site engagement, in which over 80 clinical centers indicated willingness to participate in the pilot registry by filling out an online survey. Results: The stakeholder forum revealed enthusiasm for the NROR and emphasized the need for patient-centered outcomes, minimal data burden, and maximal connectivity to existing registries and databases. In partnership with Healthcare IT, Inc, the NROR is building an electronic infrastructure to provide connectivity across radiation oncology and hospital information systems. The data dictionary provides standardized data elements in seven domains: facility characteristics, physician demographics, patient demographics and comorbidity status, radiotherapy technical data for external beam and brachytherapy, hormone therapy details, clinician- and patient-reported outcomes. Up to 30 clinical centers will be selected to serve as pilot sites through an objective, blinded, and transparent process. Pilot registry endpoints include percentage of eligible patients enrolled, percentage of data elements captured for each participant, determination of barriers to participation, and patterns of care delivery. Conclusions: The NROR pilot study will provide the framework for expansion to a nationwide electronic registry for radiation oncology.
- Published
- 2012