ABSTRACT Background :

1. Expanding the Use of Surveillance Data: the colorectal cancer monograph project, chapter one J Jackson-Thompson, MSPH, PhD, Missouri Cancer Registry & University of Missouri-Columbia, Columbia, MO • ABSTRACT • Background: • In late 2003, a group of Centers for Disease Control and Prevention/National Program of Cancer Registries (CDC/NPCR) staff and faculty/staff affiliated with a number of CDC/NPCR and National Cancer Institute/Surveillance, Epidemiology and End Results (NCI/SEER) registries began discussing preparation of a monograph on colorectal cancer (CRC). • It was felt that research and general communities would have great interest in a compilation of articles on CRC, utilizing high-quality data from a national database. • Objectives: • To present an overview of the project, with a focus on the introductory chapter; and • To present some findings. • Methods: • Invasive cases of CRC for diagnosis years 1998-2001 were used for most analyses: • 39 states, the District of Columbia and SEER Atlanta met publication criteria for data quality. • CDC/NPCR staff carried out the analyses reported here. • Rates are per 100,000 and age-adjusted to the 2000 U.S. (19 age groups) standard. • Results: • A total of 542,149 cases were included, representing 89% of the U.S. population. • Rates ranged from 42 (NM) to 63.5 (Iowa) per 100,000, with an overall rate for all races of 55.6. • Blacks had the highest rates (60.2) followed by whites (55.1), APIs (40.9) and AI/ANs (27.9). • Rates rose steadily with age, from 0.3 (15-19 age group) to 445.9 (≥ 85 age group). • Adenocarcinomas accounted for 92.6% of cases. • 77.6% of cases had one primary only. • Conclusions: • Establishment of, and adherence to, criteria for data inclusion provides uniformity that benefits researchers and other end users. • Preparation of a monograph is challenging, time-consuming and at times frustrating. • It is also rewarding. • Chapter 1: Descriptive Epidemiology of Colorectal Cancer in the United States, 1998-2001 • Lead Author: J. Jackson-Thompson, MSPH, PhD • (Missouri Cancer Registry) • Co-authors: Robert R. German, DrPH, MPH; Ahmed Faruque, MD, PhD, MPH; • Sue-Min Lai, PhD, MS, MBA; Carol Friedman, DO • Purpose of the CRC Monograph: • Excluding cancers of the skin, CRC is one of the most common cancers in the United States: • Overall, CRC ranks third in incidence for both U.S. men (after prostate and lung cancers) and women (after breast and lung cancers). • CRC is the second leading cause of death from cancer in the U.S. • We chose to focus on CRC because: • It is a common cancer; • CRC incidence rates could be reduced through diet and lifestyle changes; • CRC is amenable to screening (e.g., sigmoidoscopy, colonoscopy, etc.); and • Mortality rates could be lowered by more widespread use of screening, leading to earlier diagnosis and treatment. CRC Incidence is Declining, 1998-2001* *542,149 CRC cases (89% U.S. population coverage) • CRITERIA FOR INCLUSION OF CANCER INCIDENCE DATA* • Case ascertainment ≥ 90% complete, i.e., eachregistry’s data includes at least 90% of the expected, unduplicated cases; • ≤ 5% of cases are death certificate only (DCO) cases, i.e., ascertained solely on the basis of a death certificate; • ≤ 3% of cases missing information on sex; • ≤ 3% of cases missing information on age; • ≤ 5% of cases missing information on race; • ≥ 97%of registry’s records passed a set of single-field computerized edits. • Criteria are for all cancer sites combined. Geographic Coverage of CRC Monograph Source: NPCR and SEER high-quality data, 1998-2001 • CRC Monograph Collaborators • NPCR- and SEER-funded cancer registries • National Cancer Institute • Centers for Disease Control and Prevention • American Cancer Society • ORC Macro • Expected Uses of the CRC Monograph: • Monograph will provide high quality, national population-based data that can be used in the control of CRC. • Population subgroups can be identified and targeted for informed decision making, screening practices, treatment therapies, etc. • Intended Publication – supplement to the journal CANCER • Expected Publication Date – May 2006 This project was supported in part by a cooperative agreement between the Centers for Disease Control and Prevention (CDC) and the Missouri Department of Health and Senior Services (DHSS) (#U55/CCU721904-04) and a Surveillance Contract between DHSS and the University of Missouri. I gratefully acknowledge the technical assistance of MCR staff: Nancy Cole, CTR; Gentry White, MS; and Dr. Chetan Wasekar. • For further details about the CRC Monograph, contact: • Ahmed Faruque, MD, PhD (CDC) – fba5@cdc.gov • Robert R. German, DrPH (CDC) – rrg1@cdc.gov • J. Jackson-Thompson, PhD (MCR) – jacksonthompsonj@health.missouri.edu Related 2005 NAACCR poster: Case Completeness and Data Quality in the National Program of Cancer Registries (NPCR). Lead author: KK Thoburn, NY State Cancer Registry. (Originally a chapter in the monograph, this will now be published separately.) Thanks to the co-authors of Chapter One for their support: Robert R. German, DrPH, MPH and Faruque Ahmed, MD, PhD, MPH (CDC/NPCR); Sue-Min Lai, PhD, MS, MBA (Kansas Cancer Registry & KU); and Carol Friedman, DO (CDC/NPCR).