1. 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. 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 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* CRITERIA FOR INCLUSION OF CANCER INCIDENCE DATA* Case ascertainment ≥ 90% complete, i.e., each registry’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. *542,149 CRC cases (89% U.S. population coverage) 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 Geographic Coverage of CRC Monograph 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). 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. 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.) For further details about the CRC Monograph, contact: Ahmed Faruque, MD, PhD (CDC) – fba5@cdc.govfba5@cdc.gov Robert R. German, DrPH (CDC) – rrg1@cdc.govrrg1@cdc.gov J. Jackson-Thompson, PhD (MCR) – jacksonthompsonj@health.missouri.edu jacksonthompsonj@health.missouri.edu Source: NPCR and SEER high-quality data, 1998-2001