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.

The purpose of this webinar is to give a global overview of missing data issues and several different imputation techniques. We will also illustrate various applications of imputation techniques in population-based cancer registry settings. We will show improving completeness of biomarkers [e.g., estrogen receptor (ER) status] for breast cancer cases from population-based cancer registries through modeling techniques using standard assumption such as ER status is missing at random (MAR). Additionally, we will demonstrate use of novel imputation methods to perform sensitivity analyses if one suspects ER status is missing not at random (MNAR). The imputed databases are available to researchers for conducting a variety of analyses of breast cancer incidence trends through SEER*Stat software.

Topic 1: Overview of Missing Data Issues and Several Different Imputation Techniques.

Topic 2: Imputing Missing Estrogen Status (ER) Status for Breast Cancer Cases from Population-based Cancer Registries

Topic 3: Imputing Estrogen Receptor (ER) status under a Missing Not At Random (MNAR) Assumption

Presenters:

Barnali Das, PhD
Senior Statistician
Westat

Nadia Howlader, MS
Mathematical Statistician
Surveillance Research Program, National Cancer Institute

Rebecca Andridge, PhD
Assistant Professor, Division of Biostatistics
Ohio State University College of Public Health

Capturing KRAS Testing for Stage IV Colorectal Cancer Cases: A Tale of Two States: The objective of this presentation is to provide background information on the KRAS Site-Specific Factor, explain the quality control approach and data sources used to re-review cases, describe findings related to the frequency, data sources and timing of missed KRAS testing, and present models that illustrate patient and facility characteristics associated with KRAS testing. In addition, we plan to discuss the potential implications of our findings.

KRAS Testing and Treatment among Patients with Metastatic Colorectal Cancer: We will discuss findings on KRAS testing and treatment patterns from the Comparative Effectiveness Research project conducted with 10 registries in CDC's National Program of Cancer Registries. The objectives are to understand KRAS biomarker testing among patients with metastatic colorectal cancer and to explore the association of having a documented KRAS test and KRAS results to first line treatment, particularly EGRF inhibitor treatment. We will also compare our results with similar, earlier studies using data from SEER and eight Cancer Research Network sites.

Presenters:

Mary Anne Lynch, MPH
Early Case Capture (PYAC) Study Coordinator
Louisiana Tumor Registry

Mary E Charlton, PhD
Assistant Professor in the Department of Epidemiology
Co-Investigator of the Iowa Cancer Registry

Lori A. (Loria) Pollack, MD, MPH
CAPT, U.S. Public Health Service| Medical Epidemiologist,
Centers for Disease Control and Prevention (CDC)

Proposed Updates to the Common Rule: An Overview of the NPRM On September 2, 2015, the Department of Health and Human Services (DHHS) and fifteen other Federal Departments and Agencies announced that a Notice of Proposed Rule Making (NPRM) was put on public display and was published in the Federal Register on September 8, 2015. This NPRM proposes changes to the Common Rule (45 CFR 46 Subpart A) with the goal of better protecting human subjects involved in research, while facilitating valuable research and reducing burden, delay, and ambiguity for investigators. It also includes discussion of many of the comments received in relation to the Advance Notice of Proposed Rulemaking (ANPRM) that was released in July 2011. Included within this 519-page NPRM are approximately 45 major proposals to the Common Rule and 88 questions to which DHHS is requesting comment. Institutions involved in the conduct of human research should be aware that many of the proposals put forth in the NPRM, if implemented, would have profound and long lasting effects on the conduct and oversight of human research in the future with substantial implications for the workload of investigators, IRBs, and institutions. This webinar will provide a summary of the key portions of the NPRM and provide an opportunity for audience questions, feedback and discussion.

Presenters:

Tom Bechert, Director, Huron Consulting Group Tom has 11 years of experience working with research institutions to enhance compliance, maximize the efficiency of research operations, and improve the overall effectiveness of research operations within universities, academic medical centers, cancer centers, and community hospitals.

Madeleine Williams, Senior Director, Huron Consulting Group Maddie has over 15 years of research experience and assists clients with and human research protection program evaluation and accreditation, institutional review board operational support, research biorepository design and development, and regulatory compliance evaluations.

NAACCR released the newly revised Death Clearance Manual in December 2014 for use beginning with 2013 deaths. The Manual contains minimum requirements for performing death clearance activities that are the least NAACCR member registries must do to complete the process. Chapters 2-4 of the Manual containing the minimum requirements will be discussed in detail. Chapter 5, containing guidelines and best practices to get the most from Death Clearance, will be presented as will a review of the glossary contents. Presented by Susan Bolick and Bobbi Jo Matt of the NAACCR Death Clearance WG.

This webinar will provide an overview of life tables, introduce basic concepts and explain why they are used in cancer registry research. How to construct a life table will be explained and several smoothing methods will be discussed. Presented by Bin Huang University of Kentucky.

Timely and accurate calculation of cancer incidence rates are hampered by reporting delay, the time elapsed before a diagnosed cancer case is reported to the cancer registries. While cases in NAACCR are first reported about two years after the end of a diagnosis year (e.g. 2012 cases were reported in the December 2014 submission), in subsequent submissions the data are updated as either new cases are found or new information is received about previously submitted cases. The idea behind modeling reporting delay is to adjust the current case count to account for anticipated future corrections (both additions and deletions) to the data. These adjusted counts are valuable in more precisely determining current cancer trends. While previously, delay adjustment was only available for the SEER 9 and SEER 13 registry groups, a coordinated effort by NCI, CDC and NAACCR has led to a unified approach to estimate and report delay-adjusted rates across all of the US and Canada. While eventually we hope to allow delay adjustment for regions of the country and even individual registries, this first year of release, delay adjusted rates will only be available for SEER 9, SEER 13, SEER 18, the U.S., and Canada. After a brief introduction to delay adjustment, this talk will demonstrate how to produce delay adjusted rates in SEER*Stat, and how to export the rates to Joinpoint to produce trends in delay adjusted rates.

Ovarian cancer incidence trends in relation to changing patterns of menopausal hormone therapy use in the United States. Description: After a report from the Women's Health Initiative (WHI) in 2002, a precipitous decline in menopausal hormonal therapy (MHT) use in the United States was linked to a decline in breast cancer incidence rates. Given that MHT use is also associated with increased ovarian cancer risk, a recent analysis in NAACCR evaluated whether ovarian cancer incidence rates changed after 2002 using age-period-cohort (APC) models. This webinar provides an overview of the ovarian cancer incidence rate changes before (1995 to 2002) and after (2003 to 2008) the WHI report and describes the age-period-cohort modeling approach.

Monitoring regional cancer rates is critical for strategic local and state planning and can provide a “report card" on the health of a community and insight into how well cancer prevention programs are working. However, with increasingly scarce monetary resources, producing local cancer reports on a regular basis can be challenging. We tried to develop best practices for creating effective and easily updateable cancer reports in a timely manner using limited resources. NAACCR and NCI both have an abundant array of freely available software tools for analyzing cancer statistics. Utilizing these tools in conjunction with integrated Microsoft Office products resulted in quicker updates for our Cancer in Utah reports. Ultimately, the key to refining and streamlining the process was planning. Once specific table and figure formats were developed, updating them from year to year became much quicker and less resource intensive.

You can see the reports Kim discusses during the presenation
Cancer In Utah: An Overview of Cancer Incidence and Mortality from 1973-2010

Presenter: Kim Herget