PPT-Patient Registries

Collaboration Competition or Confusion Christopher L Bowlus MD Division of Gastroenterology and Hepatology University of California Davis Purposes of Patient Registries Describe the Natural . 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. activities are based. They constitute key instruments for increasing knowledge on Rare Diseases (RD) by pooling data for fundamental and clinical research, epidemiological research, and real-life pos 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. Guus Bronkhorst. The Netherlands. Topics. Once. . only. in the Netherlands. System of base . registries. – . law. . and. system. Standard business . reporting. – . framework. pp. Once. . only. Go . Yoshizawa. (Osaka University). Background. Patient registry for rare diseases become gradually popular to collect more information for medical research. As the registration process is mostly on a paper basis, an online-based registration system can be more effective and efficient. BSCOS Annual Meeting . Liverpool 2015. David Rowland. Good Medical Practice (2013). “You must take steps to monitor and improve the quality of your work.”. “You must take part in systems of quality assurance and quality improvement to promote patient safety.”. Jim Griffin. griffin@onehouse.com. Vienna June 2013. S. pirit of discussion. Lincoln: If two people think the same about this, we don’t need one of you.. Dialogue: Not rules, absolutes or definitive findings.. Risk factors. Incidence. Survival. Mortality. Population Surveys. PBCRs. PBCRs. Vital statistics. By Cancer Type. By stage. Attributable Risk. Prevalence. DALYs. Associated Economic Costs. Cancer Control Measures. Sonya Burroughs, Director CIQN. Stacey Gregory, Quality Assurance Coordinator CIQN. Goals of CIQN’s Population Health . I. nitiative. Improved health of pediatric population through information sharing, data analytics and registry implementation. How are cancer statistics kept up to date?. Cancer Reporting. Example: . Dx. stage . II colon . cancer - . 2007 . Cancer has . metastasized to the . liver – 2009. H. ow . does the hospital and clinician . Policies. Nichole Haywood. IRB Protocol Analyst. Phone: (804) 827-2272. Fax: (804) 827-1448. nsrichar@vcu.edu . Enid Virago, . PhD CIP, CCRP. Research Liaison Specialist for Human Research Protections. Global Perspectives & Registry Survey Results. Elaine MacEachern – Global Specialist. Secured Transactions & Collateral Registries. Magdalini Konidari – Operations Analyst. Doing Business Project . Dr Matthew Soeberg, Epidemiologist, Asbestos Diseases Research Institute. 10 July 2019. Five key concepts. Understanding the patient journey and role of different datasets . International classification of disease coding . How Are They Set Up?. Daisuke Kobayashi, MD, MPH, FSCAI. Division of Cardiology, Children’s Hospital of Michigan. Clinical Associate Professor of Pediatrics, Central Michigan University College of Medicine.