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  • Setting up NCD Surveillance in an island context: Lessons from the Pacific

    Contains 1 Component(s)

    Setting up NCD Surveillance in an island context: Lessons from the Pacific

    Setting up NCD Surveillance in an island context: Lessons from the Pacific

    Please click "Handouts" tab above to access material.

  • International Registry Review Questionnaire

    Contains 1 Component(s)

    International Registry Review Questionnaire

    International Registry Review Questionnaire

  • Regional Workshop On Using Cancer Registry Data to Inform Cancer Prevention and Control Policy/Research

    Contains 1 Component(s)

    Regional Workshop On Using Cancer Registry Data to Inform Cancer Prevention and Control Policy/Research

    This session will focus on Regional Workshop On Using Cancer Registry Data to Inform Cancer Prevention and Control Policy/Research.

    Brenda Edwards

    Senior Advisor for Cancer Surveillance

    Brenda K. Edwards, PhD, has been with the Surveillance Research Program (SRP) and its predecessor organizations at the National Cancer Institute (NCI) since 1989, serving as SRP's Associate Director from 1990-2011. She has been involved in cancer prevention and control since its formative days early in the 1980s. Dr. Edwards' research has focused on the full spectrum of cancer surveillance research, including risk factors, patterns of care, behavioral studies and survivorship, statistical methodology, and analytic studies.

    Under her leadership, NCI's Surveillance, Epidemiology, and End Results (SEER) Program has become an important resource for monitoring the nation's cancer burden and for measuring progress in cancer control. Dr. Edwards has played a major role in preparing and disseminating the “Annual Report to the Nation on the Status of Cancer."

    Dr. Edwards has received numerous awards, including the North American Association of Central Cancer Registries Calum S. Muir Memorial Award, in recognition for her work in cancer surveillance and registration. She has co-authored more than 100 peer-reviewed publications.

  • Survey Course: Understanding Population-Based Cancer Registries Course

    Contains 15 Component(s)

    Survey Course: Understanding Population-Based Cancer Registries Course

    Introduction to Cancer Registries and Cancer Surveillance

    1. Public Health Surveillance Introduction & Fundamentals
    2. Establishing an Effective Population-based Cancer Registry System

    Registry Operations

    1. Casefinding
    2. Follow-up
    3. Data Editing
    4. Record consolidation
    5. Death clearance

    Registry Management

    1. Registry Development
    2. Data Quality and Completeness
    3. Ethics & confidentiality
    4. Data Management – IT resources

    Uses of Population-Based Registry Data

    1. Calculation and Assessment of Survival Rates
    2. Calculation and Assessment of Cancer Incidence
    3. Using Central Cancer Registry Data for Cancer Control and Cancer Research
  • RDU Webinar Series: Online Interactive Tool to Improve the Understanding of Survival Statistics

    Contains 1 Component(s) Recorded On: 09/14/2017

    Background There are a variety of ways to quantify cancer survival with each measure having advantages and disadvantages. For example, relative/net survival is useful for making fair comparisons between population groups and over time, but is of less relevance to clinicians or patients. The differences between the various measures and how they should be interpreted has led to confusion among scientists, the media, health care professionals and patients. Purpose and methods. We have developed an online interactive tool to help improve the understanding of a variety of cancer survival measures and how these vary between patients. Its primary purpose is to function as an aid in the interpretation of a variety of commonly reported, important and more complex cancer survival measures that are available from fitting statistical models. The interpretation is facilitated through the use of dynamic interactive graphics available using an online interactive tool. The interactivity improves understanding of these measures and how survival or mortality may vary by age and sex. Routine measures of cancer survival are reported, such as net and all-cause survival. In addition, individualised estimates using crude probabilities are often more appropriate for patients or health care professionals. The results are presented in a variety of ways, including graphs, “people charts”, tables and descriptive text using natural frequencies. All results are updated immediately when using drag bars, drop-down menus or radio buttons. This immediate feedback together with the simple text descriptions leads to both better understanding of individual risk and the differences between the various measures. Results and conclusion The online tool is in final testing using English data for a range of cancer sites. The tool is available at www.interpret.le.ac.uk. We have plans to further develop the interactive tool by incorporating data from different countries and from statistical models that incorporate more disease characteristics (e.g. stage, grade and tumour size).

    Background

    There are a variety of ways to quantify cancer survival with each measure having advantages and disadvantages. For example, relative/net survival is useful for making fair comparisons between population groups and over time, but is of less relevance to clinicians or patients. The differences between the various measures and how they should be interpreted has led to confusion among scientists, the media, health care professionals and patients.

    Purpose and methods.

    We have developed an online interactive tool to help improve the understanding of a variety of cancer survival measures and how these vary between patients. Its primary purpose is to function as an aid in the interpretation of a variety of commonly reported, important and more complex cancer survival measures that are available from fitting statistical models. The interpretation is facilitated through the use of dynamic interactive graphics available using an online interactive tool. The interactivity improves understanding of these measures and how survival or mortality may vary by age and sex. Routine measures of cancer survival are reported, such as net and all-cause survival. In addition, individualised estimates using crude probabilities are often more appropriate for patients or health care professionals. The results are presented in a variety of ways, including graphs, “people charts”, tables and descriptive text using natural frequencies. All results are updated immediately when using drag bars, drop-down menus or radio buttons. This immediate feedback together with the simple text descriptions leads to both better understanding of individual risk and the differences between the various measures.

    Results and conclusion

    The online tool is in final testing using English data for a range of cancer sites. The tool is available at www.interpret.le.ac.uk.  We have plans to further develop the interactive tool by incorporating data from different countries and from statistical models that incorporate more disease characteristics (e.g. stage, grade and tumour size).  

    Paul C Lambert

    Paul C Lambert is a professor of Biostatistics working in the Biostatistics Research Group in the Department of Health Sciences at the University of Leicester, UK. He also part-time in the Biostatistics Group in the Department of Medical Epidemiology and Biostatistics, Karolinska Institutet, Stockholm, Sweden.

  • RDU Webinar Series: Identifying Target Areas for Colorectal Cancer Screening in Louisiana through Geospatial Analysis

    Contains 1 Component(s) Recorded On: 08/10/2017

    The Louisiana Tumor Registry (LTR), along with the Louisiana Colorectal Cancer Roundtable and geospatial experts from NCI, Westat, and Temple University, collaborated to map colorectal cancer in Louisiana to support the National Colorectal Cancer Roundtable’s “80% by 2018” initiative. The overall goal of the project was to use multiple data sources and geospatial analyses in order to identify the places and high-risk populations who may benefit the most from screening interventions. Through this webinar, the LTR will share its experiences with address cleaning and geospatial analyses, as well as present the resulting maps and implications for screening in Louisiana.

    The Louisiana Tumor Registry (LTR), along with the Louisiana Colorectal Cancer Roundtable and geospatial experts from NCI, Westat, and Temple University, collaborated to map colorectal cancer in Louisiana to support the National Colorectal Cancer Roundtable’s “80% by 2018” initiative.  The overall goal of the project was to use multiple data sources and geospatial analyses in order to identify the places and high-risk populations who may benefit the most from screening interventions.  Through this webinar, the LTR will share its experiences with address cleaning and geospatial analyses, as well as present the resulting maps and implications for screening in Louisiana.

    Lauren S. Maniscalco, MPH

    Lauren Maniscalco has a Bachelor of Science degree in Biology from the University of Louisiana at Lafayette and a Master of Public Health degree in Epidemiology from the Louisiana State University Health Sciences Center School of Public Health.  She has been working for the Louisiana Tumor Registry since 2010 and is currently the Registry Liaison.

    Kevin Henry, PhD, MA

    Kevin Henry earned his PhD in Geography from McGill University and is currently an associate professor in the Department of Geography and Urban Studies at Temple University and a member of Fox Chase Cancer Center’s Cancer Prevention and Control Program.  He is a medical geographer focusing on the intersection between geography, public health, and epidemiology.

    Yong Yi, PhD, MS

    Yong Yi earned her PhD in Electrical Engineering from the University of Wyoming and a Master of Science degree in Statistics from Texas A&M University.  She has been working for the Louisiana Tumor Registry since 2016 and is currently the data manager.

  • RDU Webinar Series: Precision Cancer Medicine: Focus on Children

    Contains 1 Component(s) Recorded On: 02/15/2017

    This webinar is part of a series sponsored by the Research & Data Use Steering Committee. The idea is to bring high quality presentations that were presented during the annual conference to a wider audience via webinar. If you have seen a presentation at the annual conference, or elsewhere, that you feel would benefit the larger NAACCR community, please suggest it be presented in this forum.

    Oncologists heave been personalizing patient care for many years. When oncologists review slides with a pathologist to arrive at an accurate diagnosis or review radiology scans to determine stage in order to determine the most appropriate treatment regimen, they are personalizing patient care. The significant advances that have occurred in gene sequencing technologies and the development of new more targeted drugs has allowed oncologists to personalize care even more by matching gene alterations (mutations, copy number alterations and translocations) found in an individuals own tumor to targeted therapies. The term precision cancer medicine is now used most often used to refer to this type of care. Dr. Katherine Janeway is pediatric hematologist-oncologist and researcher with joint appointments at Harvard Medical School, Dana-Farber Cancer Institute, and Children’s Hospital, Boston.  She is the Director of the Pediatric Solid Tumor Program, a member of the Dana-Farber/Harvard Cancer Center Genetics Program and leader of the Pediatric Oncology Precision Cancer Medicine Initiative. This presentation will provide an overview of the advances in genomics and targeted therapy that make precision cancer medicine possible and will review the research being conducted in Precision Cancer Medicine with a focus on clinical sequencing studies, basket trials and pediatric oncology.

    Katherine Janeway, MD, MMSc

    Dr. Katherine Janeway is  a pediatric hematologist-oncologist and researcher with joint appointments at Harvard Medical School, Dana-Farber Cancer Institute, and Children’s Hospital, Boston.  She is the Director of the Pediatric Solid Tumor Program, a member of the Dana-Farber/Harvard Cancer Center Genetics Program and leader of the Pediatric Oncology Precision Cancer Medicine Initiative. 

  • RDU Webinar Series: Estimating Neighbourhood-level Behavioural Risk Factor Prevalence from Large Population-Based Surveys: a Bayesian Approach

    Contains 1 Component(s) Recorded On: 11/02/2016

    This webinar is part of a series sponsored by the Research & Data Use Steering Committee. The idea is to bring high quality presentations that were presented during the annual conference to a wider audience via webinar. If you have seen a presentation at the annual conference, or elsewhere, that you feel would benefit the larger NAACCR community, please suggest it be presented in this forum.

    Complex survey-based behavioural risk factor estimates are available at the regional level, but public health insights are limited due to unobserved heterogeneity that may exist in these regions. Advanced spatial analysis techniques can produce sensible small-area estimates of risk factors and identify areas of high prevalence. This presentation describes a spatial Bayesian hierarchical model which estimates small-area prevalence of current smoking and excess bodyweight (body mass index ≥ 25 kg/m2) by pooling 5 cycles of the Canadian Community Health Survey for a region in southwestern Ontario. This study demonstrates the feasibility of a full Bayesian model for complex survey data to identify areas with elevated risk factor prevalence. These spatial analysis techniques provide small-area estimates to inform surveillance activities and may be used to explain cancer incidence at small-area levels of geography.

    Laura Seliske, PhD

    Research Associate-Surveillance Research, Analytics & Informatics

    Dr. Seliske has been a Research Associate with Cancer Care Ontario since 2012, and is involved in the small-area analysis of cancer and its determinants. Prior to joining Cancer Care Ontario, Dr. Seliske completed her training in epidemiology at Queen's University, in Kingston Ontario.

  • RDU Webinar Series: Data Visualization a Tool for Sharing Cancer Registry Data

    Contains 1 Component(s) Recorded On: 10/12/2016

    This webinar is part of a series sponsored by the Research and Data Use Steering Committee. The idea is to bring high quality presentations that were presented during the annual conference to a wider audience via webinar. If you have seen a presentation at the annual conference, or elsewhere, that you feel would benefit the larger NAACCR community, please suggest it be presented in this forum.

    North American cancer registries excel at collecting high-quality data and, as a result, they are among the most sophisticated disease surveillance systems in the world. We have not always focused equal effort on sharing our knowledge with the rest of the world in an easily consumable format. This webinar will show how modern data visualization methods can be used to make our data easier to access and understand for both internal and external stakeholders. Attendees will gain a high-level understanding of state-of-the-art data visualization principles and methods to can be used to enhance communication of cancer registry data in multiple forms including operational reports, surveillance reports, and research results.

    The first portion of this webinar will review basic principles of visual design and provide an overview of different data visualization approaches. We will describe how to match the message you are trying to convey with the different types of graphs and design approaches. Through a series of make-overs, we will demonstrate how different data visualization techniques can improve the effectiveness of your data presentations. Finally, we will provide attendees with pointers to resources to help apply these principles in their work.

    In the second portion of the webinar will describe examples from the Colorado Central Cancer Registry (CCCR) of several data visualization and dissemination projects that make registry data easier to access and understand. Specific examples of recent data visualizations will be shown and discussed with the audience, with an emphasis on how processes have changed related to data dissemination. We will also discuss successes and barriers of using the new technology.

    David Stinchcomb

    Senior Health Research Manager

    Dave Stinchcomb is a senior health research manager at Westat Inc. focusing primarily on disease surveillance, geospatial analysis, data linkages, public health informatics, and data visualization. At Westat, Mr. Stinchcomb chairs a data visualization working group that serves as a steering committee for Westat's data visualization activities.

    Randi Rycroft, MSPH, CTR

    Director

    Randi Rycroft is the Director of the Colorado Central Cancer Registry at the Colorado Department of Public Health. She has worked for the Department of Health for nearly 28 years and has served as CCCR's Director for the past 13 years. Randi is currently serving as co-Chair of NAACCR's Standardization & Registry Development Steering Committee.

  • Registry of the Future Open Forum: Real-Time Reporting Update and Discussion

    Contains 1 Component(s)

    The Assessment of Central Cancer Registry Timeliness and Reporting Standards Task Force present their survey findings for members that were not able to attend the NAACCR Conference Registry of the Future session.

    Over the past several years, NAACCR hosted several sessions focused on the “Registry of the Future". One of the common themes emanating from those sessions is that the registry of the future must be able to produce incidence rates in a more timely manner to meet customers' needs. The Assessment of Central Cancer Registry Timeliness and Reporting Standards (ACCR-TRS) Task Force is focusing on this aspect of the Registry of the Future to 1) determine barriers, challenges, and opportunities to improve timeliness of cancer reporting; and, 2) investigate the feasibility of changing central registry reporting timeliness standards to reflect better current practices and needs of registries and their customers. This webinar is a presentation of the results of the Central Registry Survey: Feasibility of Improving Timeliness and Reporting Standards distributed in May 2016. To augment what we learned from the survey, the webinar will also include a brief presentation by the 12-Month Data Task Force, describing results from their evaluation of the completeness and quality of 12-month data submitted by registries to NAACCR in their annual call for data.

    Winny Roshala, BA, CTR

    Director of Data Quality Control

    Ms. Roshala serves as the Director of Data Quality Control with the Cancer Registry of Greater California. She also currently serves as a member of the North American Association of Central Cancer Registries (NAACCR) Board of Directors, as well as various NAACCR Steering Committees, Work Groups and Task Forces.

    Mary Jane King, MPH, CTR

    Manager

    Mary Jane King received her Master of Public Health degree from the University of Massachusetts, and is a Certified Tumor Registrar and Medical Practice Manager. She has managed general practitioner practices in the US and in the UK. She trained for cancer registration in a hospital setting in Connecticut and worked in two US state cancer registries before becoming the manager of the Ontario Cancer Registry in 2006.

    Antoinette Stroup, PhD

    Director

    Nan Stroup is the Director of the New Jersey State Cancer Registry, and has previously served as the Co-Chair of the Standardization and Registry Development Steering Committee. She currently serves on the Board of Directors as President-Elect. Nan will be providing an overview of the project and describe survey responses in the Registry Profile section of the survey. Nan will also provide a short summary of next steps, which will occur toward the end of the presentation.

    Frank Boscoe, PhD

    Research Scientist

    Frank Boscoe is a long-time employee of the New York State Cancer Registry and is currently a member of the NAACCR Board of Directors. Today he will be reporting on data quality measures of the 12 month data submission versus the 23 month data submission.

    Randi Rycroft, MSPH, CTR

    Director

    Randi Rycroft is the Director of the Colorado Central Cancer Registry at the Colorado Department of Public Health. She has worked for the Department of Health for nearly 28 years and has served as CCCR's Director for the past 13 years. Randi is currently serving as co-Chair of NAACCR's Standardization & Registry Development Steering Committee.