PPT-Overview of the National Childhood Cancer Registry (NCCR)

Cancer Center Data Summit February 8 2021 NCCR Purpose Leverage and link disparate data from multiple sources to create an infrastructure that can better support research on childhood cancer Core data derived from cancer registries but extended and expanded to include additional relevant information such as. Cancer Data Saves Lives. The Vital Role of Cancer Registrars . in the Fight against Cancer. 18 Million. . 1.5 million. . 67%. Cancer Registries. Statistics. Treatment strategies. Public health initiatives. Introductions. NIST. Office of Data and Informatics (ODI) of the Material Measurement Laboratory. Robert Hanisch, director. Ray . Plante. , interoperability expert. ODI has responsibility for ~100 Standard Reference Data products and leads NIST efforts to improve data dissemination. Linda Cope, CTR. HCC Registry . Coordinator. copel@musc.edu. Commission on Cancer . DHEC’s SC Central Cancer Registry. CoC facilities collect data in standardized codes and report to NCDB. . SC Law: CHAPTER 35; . Agenda. Overview and Intent of the CE Registry. Licensee Sign Up Process for the CE Registry. NAB CE Registry. In 2017, NAB launched a CE Registry system that is available nationwide to all licensees.. Quality Review of Pancreas Cancer Presenter: Patrick Nicolin , BA, CTR Metropolitan Detroit Cancer Surveillance System (MDCSS) Wayne State University MDCSS Population-based, central cancer registry CANCER. CHAPTER . 10. ANZDATA Registry Annual Report 2013. Figure 10.1. ANZDATA Registry Annual Report 2013. Figure 10.2. Cumulative Incidence of all Cancers in Australia and . New Zealand (excluding non-melanocytic skin cancers). Kimberly Herget, MStat. Utah Cancer Registry. NAACCR/IACR Annual Conference, June 2019. Acknowledgement: . Supported by the Centers for Disease Control and Prevention National Program of Cancer Registries under cooperative agreement NU58DP006320.. February 8, 2021. Stephanie M. Hill, MPH, CTR. Associate Director . North American Association of Central Cancer Registries. shill@naaccr.org. Overview. Introduction to NAACCR. NAACCR Data Exchange Standards. BENCHISTA . Protocol – . co-designed by . University College London, UK and Istituto Nazionale dei Tumori di Milano”, Milan, Italy, with input from all participating . PBCRs.. . *PBCRs collate their depersonalised patient-level dataset according to the data requirements of the BENCHISTA protocol. . Texas Cancer Registry. Texas Department of State Health Services. Agenda – July 7, 2022. General Updates. July 2022 Organizational Chart. Proposed Rules Change. BACKGROUND AND PURPOSE. The purpose of the proposal is to make amendments that will allow for greater flexibility in Texas Cancer Registry data request requirements. Current rule language requires researchers to obtain approval from the DSHS Institutional Review Board (IRB). However, most state cancer registries participate in the federal National Cancer Institute’s Virtual Pooled Registry (VPR) IRB, which allows researchers to use a single IRB to request cancer registry data from multiple jurisdictions. The proposed amendments will allow researchers to submit their study and obtain approval from either the VPR IRB or the DSHS IRB. Researchers with studies that do not meet the requirements for submission to the VPR IRB would still be required to submit their study for review and approval through the DSHS IRB. The proposal also amends current rule language to update the DSHS Texas Cancer Registry email address and make other clarifying, non-substantive changes. . ANNA GIGLI . – . National . Research Council. , . Italy. SILVIA FRANCISCI – . National Health Institute, Italy. STEFANO GUZZINATI – . Veneto Cancer Registry, Italy. LUIGINO DAL MASO – . Aviano Cancer Institute, Italy. Summary Belgium. National . Coverage. . since. 2004, 11 . Mio. pop. Incidence. 2004-2011 . available. Flemish. . Region. (. northern. part) . since. . 1999 . 2 . Councils. : General board . and. Stephanie M. Hill, MPH, CTR. Associate Director, NAACCR. Objectives. Discuss the justification for forming a national registry of childhood cancers. Detail the NCCR infrastructure. Provide an update on the current status of the NCCR. Report. Figure 9.1. .. Median height . z. -scores for transplant patients <16 years old in 2013, centre specific and national averages.. UK Renal Registry . 17th Annual. Report. Figure 9.2. .. Median height .