Enhancing Cancer Registries for Early Case Capture (ECC) of Pediatric and Young Adult Cancer (PYAC) Cases

With this application, the Kentucky Cancer Registry (KCR) is applying for the Centers for Disease Control and Prevention (CDC) Agency Funding Opportunity (FOA) Number DP14-1402, Enhancing Cancer Registries for Early Case Capture (ECC) of Pediatric and Young Adult Cancer (PYAC) Cases. The purpose of this announcement is to support ongoing implementation of the Caroline Pryce Walker Conquer Childhood Cancer Act through the enhancement of the central cancer registry infrastructure and the facilitation of early case capture of pediatric cancer within weeks of diagnosis. Data from KCR show that 1,022 new PYAC cases of cancer were diagnosed in Kentucky between 2007 and 2011. Medical facilities that diagnose or treat cancer (including hospitals, physician offices, treatment facilities, and pathology laboratories) report data to the KCR within the required timeframe of up to 12 months, which allows for the complete collection of the first course of treatment. Non-ECC cancer registry data are typically made available for surveillance activities within 24 months of diagnosis to allow adequate time for data processing, quality assurance, and linkage activities. KCR proposes to build upon the successful strategies that were learned through our participation in the previous FOA, DP11-1107. We propose to maintain and enhance regional infrastructures to track the incidence of pediatric cancer for inclusion in the comprehensive nationwide registry of actual occurrences and to leverage ECC data for cancer prevention and control activities. Continued enhancements to the electronic infrastructure at KCR, as well as expanded collaborations with facility sites within Kentucky and among contiguous states will further increase the ability to capture Kentucky PYAC cases within weeks of diagnosis and to positively impact the incidence and mortality of PYAC. KCR and other ECC states have demonstrated that electronic reporting best facilitates rapid reporting and is the most cost effective and sustainable approach to ECC. KCR proposes to sustain and continue to enhance electronic reporting through electronic pathology (e-Path), electronic radiology (e-Rad), and in-state and out-of-state Health Information Exchanges (HIEs). Standardized e-Path reporting currently provides KCR with the majority of ECC cases. Since implementations began in 2004, KCR has established e-Path reporting from 44 pathology laboratories. We estimate that KCR’s population-based e-Path coverage exceeds 90% of all histologically confirmed cases in Kentucky. KCR has also established e-Rad reporting from one large hospital facility in Kentucky. The expansion of e-Rad reporting is a high priority of our strategy moving forward. A significant accomplishment during the previous FOA was KCR’s highly successful collaboration with the Indiana HIE, through the Regenstrief Institute for Health Care at Indiana University. This collaboration resulted in the establishment of electronic data feeds of e-Path and clinical documents for Kentucky cancer patients seen in Indiana healthcare facilities. The clinical data feed from the Indiana HIE is being developed to follow Meaningful Use (MU) Stage 2 standards. In addition, KCR leads the nation in the development of physician electronic health record (EHR) reporting. KCR currently receives standardized physician EHR records that are securely transmitted through the Kentucky Health Information Exchange in accordance with MU Stage 2 standards. KCR was the first and remains the only central cancer registry in the United States to achieve this important MU milestone. KCR is actively engaged with five additional providers to establish new standardized physician EHR feeds. As a result, KCR is uniquely positioned to continue to demonstrate success with pediatric and young adult cancer early case capture. Another significant accomplishment towards the dissemination and utilization of pediatric data for cancer prevention and control has been the implementation of childhood cancer-rates in KCR’s cancer-rates.info web service. This interactive web-based query tool has been used to reveal potential disparities in PYAC among Kentucky’s underserved Appalachian population. We propose to further enhance this valuable resource to explore the incorporation of ECC data to provide early estimates of childhood incidence rates for cancer prevention and control. We propose to continue to make cancerrates. info pediatric rates available, free of additional charge, to all funded ECC states.