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  • Revised Common Rule

    Contains 4 Component(s)

    The revised Common Rule (effective January 21, 2019) is designed to strengthen protections for study participants and lighten administrative workloads for researchers and IRBs alike. These changes impact how research studies involving linkage with cancer registries, like those managed through NAACCR’s Virtual Pooled Registry, will be reviewed and processed across the country. NAACCR has partnered with the HHS Office for Human Research Protections (OHRP) to share information on the revised Common Rule, such as when research involving registries requires IRB review and the impact of the changes on research covered by the revised regulations. Intended Audience: State/University IRBs and staff from central cancer registries involved in linking with research studies and releasing coded cancer data for matched cases.

    The revised Common Rule (effective January 21, 2019) is designed to strengthen protections for study participants and lighten administrative workloads for researchers and IRBs alike.  These changes impact how research studies involving linkage with cancer registries, like those managed through NAACCR’s Virtual Pooled Registry, will be reviewed and processed across the country.  NAACCR has partnered with the HHS Office for Human Research Protections (OHRP) to share information on the revised Common Rule, such as when research involving registries requires IRB review and the impact of the changes on research covered by the revised regulations.  

    Intended Audience: State/University IRBs and staff from central cancer registries involved in linking with research studies and releasing coded cancer data for matched cases.

    Jaime Hernandez, J.D.; M.Be.

    Management and Program Analyst, Office for Human Research Protection (OHRP)

    Jaime (Hi May) Hernandez is an attorney and bioethicist at the Office for Human Research Protections (OHRP), in the U.S. Department of Health and Human Services.  Before joining OHRP, Mr. Hernandez was a Senior Research Investigator at the University of Pennsylvania, Department of Medical Ethics and Health Policy.  Prior to that, he was a Litigation Associate at Hughes Hubbard & Reed, L.L.P.  He also served as an Administrator for the social and behavioral science IRB at the University of Pennsylvania, Office of Regulatory Affairs.  Mr. Hernandez obtained his Juris Doctorate (J.D.) at the University of California, Berkeley School of Law and his Masters in Bioethics (M.Be.) at the University of Pennsylvania, Perelman School of Medicine.  

    Misti Anderson, MS, MA

    Senior Advisor, Office for Human Research Protection (OHRP)

    Misti Anderson serves as a Senior Advisor for Public Health Education in the Division of Education and Development of the HHS Office for Human Research Protections (OHRP). Prior to joining OHRP, Ms. Anderson was a Senior Policy and Research Analyst at the Presidential Commission for the Study of Bioethical Issues, where she served as staff lead for the Bioethics Commission’s educational materials and for both volumes of the Bioethics Commission’s Gray Matters report on neuroscience and ethics. She holds an M.S. in Biomedical Science Policy and Advocacy from Georgetown University, an M.A. in Science Education from UNC-Chapel Hill, and a B.S. in Microbiology from Clemson University.

    Castine Clerkin, MS, CTR

    VPR Program Manager, NAACCR

    Castine is the Program Manager for NAACCR’s Virtual Pooled Registry project. In this role she oversees all aspects of the project, from pilot linkages to workgroup calls to system development and testing.  Prior to joining NAACCR, Castine was a Program Consultant with CDC’s National Program of Cancer Registries for over 7 years.  Castine began her career in cancer surveillance in 2001, working as the epidemiologist and data manager for the Maine Cancer Registry.

    Steve Friedman, MHA

    Senior Advisor, Surveillance Research Program, NCI/DCCPS

    SteveFriedman, MHA, joined the Surveillance Research Program as a Senior Advisor forOperations in July of 2015. He works on several major initiatives, includingSEER, Natural Language Processing (NLP), the Virtual Bio-Repository (VTR) andthe Virtual Pooled Registry (VPR). In January 2018 he was named the LeadContracting Officer Representative (COR) for the SEER Program. Mr. Friedmanserved as a founding Director for the Association for the Accreditation ofHuman Research Protection Programs and is a past President of the Board for theUlmanCancer Fund for Young Adults. He is the recipient of several NIH Merit Awardsand a NIH Director’s Award. Mr. Friedman received his Master of Health ServicesAdministration from the George Washington University and is currently AdjunctFaculty with the MPH@GWU program.

  • Informatics Tools and Processes for the XML Data Exchange Standard

    Contains 2 Component(s) Recorded On: 07/22/2020

    The XML webinar will be covering NAACCR XML Informatics Tools and Processes to prepare the NAACCR community for 2021. We will have 4 presentations from several software vendors and central registries that have either already made the transition to XML or are about to finish and would like to share their software, tips, and techniques with the NAACCR community.

    The XML webinar will be covering NAACCR XML Informatics Tools and Processes to prepare the NAACCR community for 2021. We will have 4 presentations from several software vendors and central registries that have either already made the transition to XML or are about to finish and would like to share their software, tips, and techniques with the NAACCR community.

    Fabian Depry

    Senior Systems Analyst; Information Management Services

    Fabian Depry, focuses on the design and implementation of biomedical computer systems.  He has extensive experience and expertise in systems design and object-oriented programming, focusing mainly on Java Desktop and Web applications. Mr. Depry is a lead developer and designer on the SEER*DMS project.  He also designed and developed the SEER Abstracting tool, the SEER*Edits Submission tool and the SEER Data Viewer tool.  Mr Depry holds a BS in Computer Science from Universite Catholique de Louvain (UCL), Belgium and a MS in Computer Science from Hood College, Frederick.  He has been with IMS since 2003.

    Valerie Yoder

    Informatics, Utah Cancer Registry

    Valerie Yoder has a Bachelor’s of Science in Computer Science with a focus on algorithms and data processing. She has worked in the Utah Cancer Registry Informatics department for four years. Previously, she worked in pre-clinical medical imaging developing image analysis processes

    Isaac Hands

    Lead Software Architect, Kentucky Cancer Registry

    Isaac Hands leads the software development efforts of the Kentucky Cancer Registry andassist in managing informatics operations, providing technical leadership, anddesigning data infrastructure at the Kentucky Cancer Registry and the UK MarkeyCancer Center Research Informatics Core. Mr. Hands oversees the software development,database and network operations, and customer support of the state-wide cancerpatient data management system in use at all hospital facilities in KY and thestatewide SEER/NPCR central cancer registry software.

    Michelle Esterly

    Employed by Katmai Government Services

    Michelle Esterly received her B.S. in Health Information Administration from Gwynedd Mercy University and achieved certification as a Registered Health Information Administrator in 1997. She worked for the Pennsylvania Cancer Registry in various positions before joining the CDC Registry Plus Team as a contractor in 2015. Ms. Esterly has six years of experience in hospital cancer registries and received her CTR in 1996. Ms. Esterly is currently employed by Katmai Government Services and is a contractor for the National Program of Cancer Registries Division of Cancer Prevention and Control Centers for Disease Control and Prevention

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  • NAACCR 2020 Virtual Conference - June 23 - June 25

    Contains 10 Component(s)

    NAACCR 2020 Virtual Conference: Cancer Surveillance: Keystone of Progress

    NAACCR 2020 Virtual Conference: Cancer Surveillance: Keystone of Progress

    Plenary Session 1: Future Directions in Cancer Surveillance Standards and Data Collections

    Cloud Computing and the STAR Project

    Dr. Lisa Richardson; Director; CDC Division of Cancer Prevention and Control (DCPC)

    New Directions and Rationale - CoC

    Dr. Lawrence Shulman; Professor of Medicine at the Hospital of the University of Pennsylvania

    CAP Cancer Protocols and e-Cancer Reporting

    Dr. Samantha Spencer; Director, Structured Reporting; College of American Pathologists

    Tapping Non-Traditional Data Sources

    Dr. Lynne Penberthy; Associate Director; NCI-SEER

    Plenary Session 2: Advances in Pediatric Cancer and Surveillance

    Pediatric Health Information System - Understanding the Differences

    Dr. Richard Aplenc; Associate Professor of Pediatrics; Children's Hospital of Philadelphia

    National Childhood Cancer Registry

    Dr. Dennis Deapen; Director of LA Cancer Surveillance Program, Professor of Clinical Preventive Medicine; University of Southern California, Keck School of Medicine

    Results of the Childhood Cancer Survivors Study Match with the Virtual Pooled Registry

    Dr. Gregory T. Armstrong; Member; Department of Epidemiology and Cancer Control; St. Jude Children's Research Hospital

    Childhood Cancer Staging Guidelines- Toronto Staging Guidelines

    Dr. Sumit Gupta; Staff Oncologist and Clinician Investigator Hematology/Oncology; SickKids, University of Toronto

    Plenary Session 3: Social Determinants and Cancer

    Introduction of Social Determinants of Cancer

    Scarlett Lin Gomez; Co-Investigator; Greater Bay Area Cancer Registry

    Visually Assessed Socio-Physical Environment Linked to a Cancer Registry: Application to Breast Cancer Survival Disparities

    Dr. Jesse John Plascak; Instructor of Epidemiology; Rutgers University

    Economic Burden of Cancer

    Dr. Robin Yabroff, Senior Scientific Director, American Cancer Society

    Plenary Session 4: Cancer Informatics

    Cancer Surveillance and Bioinformatics

    Dr. Warren Kibbe; Chief Data Officer; Duke Cancer Institute

    Collection of Pathomic Data in Central Cancer Registries

    Dr. David J. Foran; Chief Informatics Officer and Director of Biomedical Informatics & Computational Imaging, Rutgers Cancer Institute of New Jersey

    Informatics and Cancer Registries

    Dr. Georgia Tourassi

    Informatics and Natural Language Processing in Canada

    Dr. Marshall Pitz; Chief Medical Information Officer; CancerCare Manitoba

    Plenary Session 5: NCI/NAACCR Zone Design for Cancer Reporting Project and CDC Pilot Project to Visualize Cancer Data at the Sub-County Level

    NCI/NAACCR Zone Design Project Overview, Challenges, Current Status, and Steps Forward

    Diane Ng; Westat

    CaliforniaHealthMaps.org: Moving Beyond County Statistics to More Meaningful Geographies

    Dr. Debby Oh; Greater Bay Area Cancer Registry

    The NCI/NAACCR Cancer Reporting Zone Project: Selecting the Preferred Zone Geography Alternative in Idaho

    Christopher Johnson; Cancer Data Registry of Idaho

    CDC Pilot Project to Visualize Cancer Data at Sub-County Level

    S. Jane Hanley; Centers for Disease Control and Prevention

  • Topics in AI/AN Cancer Surveillance

    Contains 2 Component(s) Recorded On: 05/20/2020

    AI/AN people experience a different burden of cancer than their non-Native counterparts. This webinar will discuss current issues in AI/AN cancer surveillance, and present research that aims to describe and understand cancer among Indigenous peoples in the US and Canada.

    AI/AN people experience a different burden of cancer than their non-Native counterparts. This webinar will discuss current issues in AI/AN cancer surveillance, and present research that aims to describe and understand cancer among Indigenous peoples in the US and Canada.

    Addressing racial misclassification for AIAN people in cancer surveillance presented by Melissa Jim, CDC

    Misclassification of AI/AN as non-AI/AN in cancer surveillance has resulted in the underestimation of the cancer incidence in these populations. I routinely link Indian Health Service (IHS) patient registration data with data from central cancer registries that are part of the Centers for Disease Control and Prevention’s National Program of Cancer Registries (NPCR) and the National Cancer Institute’s Surveillance, Epidemiology, and End Results (SEER) Program. I will describe our IHS linkage and demonstrate how to find AI/AN cancer data by IHS Region on the United States Cancer Statistics: Data Visualizations website. Accurate cancer data is crucial to develop public health strategies and programs to address cancer disparities.

    Northwest Tribal Epidemiology Center – Sharing cancer data with Tribal populations in the PNW present by Sujata Joshi and Rosamaria Frutos, NPAIHB

    The Northwest Portland Area Indian Health Board (NPAIHB) will present on how we obtain and utilize cancer surveillance data to support community-based cancer intervention and education projects in Northwest tribal communities. We will briefly discuss our efforts to obtain linkage-corrected cancer data, how we communicate the data to tribal partners, and provide examples of how tribes have utilized data for prevention efforts.

    Stomach Cancer Incidence and Mortality Trends among Circumpolar Populations-presented by Jonathan Simkin, BC Cancer

    Stomach cancer is largely preventable. Despite declining trends in stomach cancer incidence and mortality among many circumpolar nations, the stomach cancer burden does not appear equally distributed among regional sub-populations, including Indigenous peoples.  Here, we provide a comprehensive and up-to-date assessment of stomach cancer incidence and mortality trends among circumpolar nations and regional populations using population-based data and discuss trends in relation to regional risk factors.

    Rosamaria Frutos

    Cancer Project Coordinator

    Rosa Frutos is the Cancer Project Coordinator at Northwest Portland Area Indian Health Board and helps coordinate the Northwest Tribal Comprehensive Cancer Program funded by CDC’s Comprehensive Cancer Control Grant. She graduated from the University of Washington with a Masters in Social Work and is an enrolled member of the Confederated Tribes of Warm Springs.

    Sujata Joshi

    Project Director

    Sujata Joshi is the Project Director of NPAIHB’s Improving Data and Enhancing Access-Northwest project, which works to expand Northwest Tribes’ access to accurate and timely health data. Ms. Joshi obtained her MSPH in Epidemiology from the Rollins School of Public Health, and has worked in tribal epidemiology for 9 years. 

    Melissa Jim

    Epidemiologist

    Melissa A. Jim, MPH (Diné) is an Epidemiologist with the Cancer Surveillance Branch in the Division of Cancer Prevention and Control at the Centers for Disease Control and Prevention that working in collaboration with the Indian Health Service Division of Epidemiology and Disease Prevention in Albuquerque, NM. She has been with the Cancer Surveillance Branch for over 15 years. Prior to working at CDC she worked at the New Mexico Tumor Registry.

    Jonathan Simkin

    Scientific Director

    Jonathan Simkin is the Scientific Director at the British Columbia Cancer Registry, Vancouver, Canada. He completed a Master’s of Public Health at the University of British Columbia (UBC), and is currently a PhD Candidate at the School of Population and Public Health, UBC, Canada. His research focuses on applications of geospatial methods to cancer surveillance and population oncology research. Jonathan has worked at cancer registries since 2015, previously working with the Yukon Cancer Registry as a Cancer Epidemiologist.

  • NAACCR Best Practices: Recruitment and Retention Toolkit

    Contains 2 Component(s) Recorded On: 05/06/2020

    This webinar will introduce attendees to the new NAACCR Recruitment and Retention Toolkit. The purpose of the Toolkit is to provide central cancer registries (CCRs) with proven strategies for attracting and retaining qualified staff. The Toolkit was developed by the NAACCR Professional Development Steering Committee from best practices submitted by CCRs throughout North America. Every CCR is unique, with its own recruitment and retention challenges. Consequently, no one strategy will suit the needs of every CCR, so the NAACCR R&R Toolkit contains a variety of resources to choose from and customize to meet the specific needs of the registry. The Toolkit is available at https://www.naaccr.org/recruitment-retention-toolkit/.

    This webinar will introduce attendees to the new NAACCR Recruitment and Retention Toolkit. The purpose of the Toolkit is to provide central cancer registries (CCRs) with proven strategies for attracting and retaining qualified staff. The Toolkit was developed by the NAACCR Professional Development Steering Committee from best practices submitted by CCRs throughout North America. Every CCR is unique, with its own recruitment and retention challenges. Consequently, no one strategy will suit the needs of every CCR, so the NAACCR R&R Toolkit contains a variety of resources to choose from and customize to meet the specific needs of the registry. The Toolkit is available at https://www.naaccr.org/recruitment-retention-toolkit/

    Carrie Bateman, BS

    Utah Cancer Registry

    Carrie Bateman has a Bachelor of Science in Information Systems from the University of Utah and has worked at Utah Cancer Registry since 2010.  She began as a part time research assistant, became informatics specialist in 2014, and transitioned to registry manager in March 2019.

    Stephanie Hill, MPH, CTR

    NAACCR

    Stephanie came to NAACCR from the New Jersey State Cancer Registry, where, as Program Manager, she experienced first-hand the many recruitment and retention challenges faced in both the health department and university settings. She is a CTR with nearly 20 years of experience in central and hospital cancer registries and is a certified Lean Six Sigma Green Belt.

  • A Step-by-Step Guide to Creating a Cancer Data Visualization

    Contains 2 Component(s) Recorded On: 02/12/2020

    Cancer data is often available in reports, public data files, and slide decks, but these methods for disseminating data are not interactive, user-friendly, or visually appealing. While data visualizations are available from national cancer organizations, the Louisiana Tumor Registry (LTR) decided that creating a tool tailored to the needs of Louisiana would be a valuable contribution to the dissemination and use of its cancer registry data. Thus, the LTR collaborated with a data visualization specialist to create a user-friendly portal for Louisiana cancer data. The objective of this webinar is to describe the experience of developing an effective data visualization from the perspective of both the data visualization specialist and the state cancer registry.

    Cancer data is often available in reports, public data files, and slide decks, but these methods for disseminating data are not interactive, user-friendly, or visually appealing. While data visualizations are available from national cancer organizations, the Louisiana Tumor Registry (LTR) decided that creating a tool tailored to the needs of Louisiana would be a valuable contribution to the dissemination and use of its cancer registry data. Thus, the LTR collaborated with a data visualization specialist to create a user-friendly portal for Louisiana cancer data. The objective of this webinar is to describe the experience of developing an effective data visualization from the perspective of both the data visualization specialist and the state cancer registry.

    Lauren Maniscalco

    MPH

    Lauren Maniscalco earned a Master of Public Health in Epidemiology from the LSUHSC School of Public Health in New Orleans, LA in 2010. Following the completion of her master's degree, she began working as the Special Studies Coordinator for the Louisiana Tumor Registry (LTR) and became the Registry Liaison in 2016. Ms. Maniscalco manages data dissemination, co-authors the LTR’s annual monographs and reports, and coordinates the data visualization project.

    Cathy Bledsoe

    MPH

    Cathy Bledsoe has a Master of Public Health in Epidemiology from the Colorado School of Public Health. She has worked with cancer registries since 2011, first with the Colorado Central Cancer Registry and later as a contractor with the Cancer Surveillance Branch at CDC. In 2017, she co-founded One Health Insights, a consulting company focused on helping public health and environmental organizations use their data effectively. 

  • Understanding Central Cancer Registries

    Contains 21 Component(s)

    Understanding Central Cancer Registries

    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
      1. Module 1 - Course Introduction
      2. Module 2 - Managing Central Registry's Data
      3. Module 3 - Infrastructure
      4. Module 4 - Security
      5. Module 5 - Electronic Documents and Standards
      6. Module 6 - Interoperability
      7. Module 7 - Registry of the Future
      8. Module 8 - Course Summary

    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
  • Interstate Data Exchange

    Contains 3 Component(s) Recorded On: 12/11/2019

    This webinar will be an overview of the NAACCR Interstate Data Exchange Guidelines, the National Interstate Data Exchange Agreements, and the National Interstate Data Exchange Application System (N-IDEAS).

    This webinar will be an overview of the NAACCR Interstate Data Exchange Guidelines, the National Interstate Data Exchange Agreements, and the National Interstate Data Exchange Application System (N-IDEAS).

    Susan Gershman

    Director

    Director of the Massachusetts Cancer Registry

    Reda Wilson

    Epidemiologist

    Reda Wilson, MPH, CTR is an Epidemiologist with CDC’s Cancer Surveillance Branch.  Ms. Wilson has more than 30 years’ experience in cancer surveillance; in an oncology practice and pathology laboratory, as a hospital cancer registrar, Director of the Alabama Statewide Cancer Registry, and Program Consultant with CDC’s National Program of Cancer Registries before moving to her current epidemiology position.  She is the author or co-author of several presentations and publications.

    Shailendra Bhavsar

    Technical Specialist

    Mr. Bhavsar is currently a technical specialist at ICF, with more than 18 years of experience in the IT industry, of which over 10 years have been dedicated to cancer surveillance community. He is a development manager and security steward for the CDC/NPCR-CSS project awarded to ICF.  His responsibilities include supporting the project operations from systems and application perspective, involving in the system and software design and full life cycle system implementation, including NPCR-CSS document server, monitoring system, various utility programs, and on-line query applications. He is a certified Microsoft application developer with extensive experience in VB and .Net technologies and many data reporting development tools.  As a security steward, he is also well versed in security issues and familiar with federal IT security standards. Mr. Bhavsar holds a B. Ed degree, two BS degrees in physics and mathematics respectively, all from Gujarat University in India.

  • Cancer in World Trade Center Rescue & Recovery Workers: Past Findings, Current Research and the Future

    Contains 2 Component(s) Recorded On: 09/11/2019

    The collapse of the World Trade Center (WTC) towers due to the terrorist attacks on September 11, 2001 created an unprecedented mixture of hazardous materials including known and suspected carcinogens including, but not limited to, asbestos, polycyclic aromatic hydrocarbons, polychlorinated biphenyls, and dioxins. Three research centers that follow cohorts of rescue/recovery workers since the WTC disaster include: the Fire Department of the City of New York (FDNY); the Icahn School of Medicine at Mount Sinai (ISMMS); and the New York City Department of Health and Mental Hygiene (DOHMH). These centers have reported mostly non-significantly elevated cancer rates post-exposure to the WTC-site. Challenges of determining the causal relationship between WTC exposure and cancer in rescue/recovery workers include: lack of individual-level exposure data for specific chemicals, different exposure ascertainment methodologies for the three cohorts, loss to follow-up, inadequate power for cohort-specific analyses, demographic heterogeneity between the cohorts, and the lack of a viable comparison cohort.

    The collapse of the World Trade Center (WTC) towers due to the terrorist attacks on September 11, 2001 created an unprecedented mixture of hazardous materials including known and suspected carcinogens including, but not limited to,  asbestos, polycyclic aromatic hydrocarbons, polychlorinated biphenyls, and dioxins. Three research centers that follow cohorts of rescue/recovery workers since the WTC disaster include: the Fire Department of the City of New York (FDNY); the Icahn School of Medicine at Mount Sinai (ISMMS); and the New York City Department of Health and Mental Hygiene (DOHMH). These centers have reported mostly non-significantly elevated cancer rates post-exposure to the WTC-site.  Challenges of determining the causal relationship between WTC exposure and cancer in rescue/recovery workers include: lack of individual-level exposure data for specific chemicals, different exposure ascertainment methodologies for the three cohorts, loss to follow-up, inadequate power for cohort-specific analyses, demographic heterogeneity between the cohorts, and the lack of a viable comparison cohort.

  • Geocoding Instructional Webinar

    Contains 3 Component(s) Recorded On: 08/21/2019

    During this webinar, presenters will introduce, review, demo and/or discuss: 1. Alias Tables for improving data quality and reducing the burden of manual matches 2. Micro Match Status-a new variable describing the quality of a geocoding match 3. Advanced Search options including "Exhaustive Search," "Uncertainty Hierarchy," and "Limit Minimum Match Score" 4. New NAACCR Manual Geocoding Interface (Beta version) 5. Operations: how to interpret long/lat precision, which census years to append This webinar is relevant to all users of the NAACCR Geocoder including those accessing via the NAACCR Webpage or API, such as SEER*DMS users.

    During this webinar, presenters will introduce, review, demo and/or discuss: 

     1. Alias Tables for improving data quality and reducing the burden of manual matches

     2. Micro Match Status-a new variable describing the quality of a geocoding match 

     3. Advanced Search options including "Exhaustive Search," "Uncertainty Hierarchy," and "Limit Minimum Match Score" 

     4. New NAACCR Manual Geocoding Interface (Beta version)

     5. Operations: how to interpret long/lat precision, which census years to append

    This webinar is relevant to all users of the NAACCR Geocoder including those accessing via the NAACCR Webpage or API, such as SEER*DMS users.