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Expanding the Use of Surveillance Data: the colorectal cancer monograph project, chapter one J Expanding the Use of Surveillance Data: the colorectal cancer monograph project, chapter one J Jackson-Thompson, MSPH, Ph. D, Missouri Cancer Registry & University of Missouri-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. CRC Incidence is Declining, 1998 -2001* Chapter 1: Descriptive Epidemiology of Colorectal Cancer in the United States, 1998 -2001 Lead Author: J. Jackson-Thompson, MSPH, Ph. D (Missouri Cancer Registry) Co-authors: Robert R. German, Dr. PH, MPH; Ahmed Faruque, MD, Ph. D, MPH; Sue-Min Lai, Ph. D, MS, MBA; Carol Friedman, DO Purpose of the CRC Monograph: Methods: • Invasive cases of CRC for diagnosis years 1998 -2001 were used for most analyses: Ø 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. • 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. *542, 149 CRC cases (89% U. S. population coverage) 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. Geographic Coverage of CRC Monograph 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 singlefield computerized edits. Source: NPCR and SEER high-quality data, 1998 -2001 CRC Monograph Collaborators • Expected Uses of the CRC Monograph: • Monograph will provide high quality, national population-based data that can be used in the control of CRC. 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, Dr. PH, MPH and Faruque Ahmed, MD, Ph. D, MPH (CDC/NPCR); Sue-Min Lai, Ph. D, MS, MBA (Kansas Cancer Registry & KU); and Carol Friedman, DO (CDC/NPCR). NPCR- and SEER-funded cancer registries • National Cancer Institute • Centers for Disease Control and Prevention • Intended Publication – supplement to the journal CANCER • American Cancer Society • Expected Publication Date – May 2006 • Criteria are for all cancer sites combined. • • ORC Macro • Population subgroups can be identified and targeted for informed decision making, screening practices, treatment therapies, etc. 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) (#U 55/CCU 721904 -04) and a Surveillance Contract between DHSS and the University of Missouri. For further details about the CRC Monograph, contact: I gratefully acknowledge the technical assistance of MCR staff: Nancy Cole, CTR; Gentry White, MS; and Dr. Chetan Wasekar. free template from www. brainybetty. com • Ahmed Faruque, MD, Ph. D (CDC) – fba [email protected] gov • Robert R. German, Dr. PH (CDC) – rrg [email protected] gov • J. Jackson-Thompson, Ph. D (MCR) – [email protected] missouri. edu