CANCER REGISTRY REFERENCES
This listing of materials is considered to be essential to any registry and every effort should
be made to obtain these materials. For most of publications, an electronic version is
available.
Note: The following is based on the most current version of the manuals and websites available
as of January 1, 2015. The web sites for the following resources should be checked routinely as
updates are continually being posted.
Code Manuals and Record Layouts
1. Facility Oncology Registry Data Standards (FORDS): Revised for 2015. And Appendix B: SiteSpecific Surgery Codes. American College of Surgeons, Commission on Cancer; Chicago, IL; 2014.
https://www.facs.org/quality-programs/cancer/ncdb/registrymanuals/cocmanuals/fordsmanual.
(Intended for cancer programs, this provides detailed specifications and codes for each data item required
by the CoC). Earlier versions (available at http://www.facs.org/cancer/coc/fordsmanualolder.html):
2. Thornton M, (ed). Standards for Cancer Registries Volume II: Data Standards and
Data Dictionary, Version 15. Springfield, Ill.: North American Association of Central Cancer
Registries, June 2010.
http://www.naaccr.org/StandardsandRegistryOperations/VolumeII.aspx
(Intended for central registries, this provides detailed specifications and codes for each data
item in the data exchange record layout.)
3. Adamo MB, Johnson CH, Ruhl JL, Dickie, LA, (eds.). 2010 SEER Program Coding and Staging
Manual. National Cancer Institute, Bethesda, MD.
http://seer.cancer.gov/archive/manuals/2010/SPCSM_2010_maindoc.pdf.
(Intended for SEER Programs, this provides detailed specifications and codes for each data item
required by SEER.)
Earlier Versions:
• Johnson CH, Adamo M (eds). The SEER Program Coding and Staging Manual 2007.
Bethesda, Md.: National Institutes of Health, National Cancer Institute; January
2007. NIH Pub. No. 07-5581. (Revised September 2008.)
• Johnson CH (ed). The SEER Program Coding and Staging Manual 2004. Bethesda, Md.:
National Cancer Institute; January 2004. NIH Pub. No. 04-5581.
• Fritz A, Ries L (eds). The SEER Program Code Manual. Third Edition. Bethesda, MD: NCI;
January 1998 (updated January 2003). NIH Pub. No. 98-1999.
4. State data collection manual. Contact your state’s central cancer registry for
availability.
Stage and Extent of Disease Manuals
5. Collaborative Staging Task Force of the American Joint Committee on Cancer.
Collaborative Stage Data Collection System, Version 02.05. Chicago, Ill.: American
Updated March 2015
Joint Committee on Cancer. https://cancerstaging.org/cstage/coding/Pages/Version-02.05.aspx.
Earlier Versions available at https://cancerstaging.org/cstage/coding/Pages/Version-02.05.aspx .
6. Edge S, Byrd D, Compton C, et al (eds): AJCC Cancer Staging Manual, 7th ed.
American Joint Committee on Cancer, Chicago IL. Springer: 2009.
https://cancerstaging.org/references-tools/deskreferences/Pages/default.aspx.
Earlier Versions available at https://cancerstaging.org/referencestools/deskreferences/Pages/default.aspx :
7. Young JL Jr, Roffers SD, Ries LAG, Fritz AG, Hurlbut AA (eds). SEER Summary Staging
Manual - 2000: Codes and Coding Instructions, National Cancer Institute, NIH Pub. No. 01-4969,
Bethesda, MD, 2001. http://seer.cancer.gov/tools/ssm/
Earlier Versions available at http://seer.cancer.gov/tools/ssm/.
8. Seiffert, JE (ed). SEER Program Comparative Staging Guide for Cancer: Major Cancer
Sites, Version1.1. Bethesda, Md.: National Cancer Institute; June 1993. NIH Pub. No. 933640.
http://seer.cancer.gov/archive/manuals/historic/comp_stage1.1.pdf.
Disease Classifications
9. Fritz A, Percy C, Jack A, Shanmugaratnam K, Sobin L, Parkin D, Whelaln S (eds).
International Classification of Diseases for Oncology, Third Edition. Geneva: World
Health Organization; 2000. http://www.who.int/classifications/icd/adaptations/oncology/en/.
10. Surveillance, Epidemiology, and End Results Program. ICD-O-3 SEER Site/Histology
Validation List. Bethesda, MD: National Institutes of Health, National Cancer Institute; December
2009. NIH Pub. No. 86-2313. http://seer.cancer.gov/icd-o-3/.
11. World Health Organization. International Statistical Classification of Diseases and Related
Health Problems (ICD-10). 10th Revision. Volume 1 (of 3). Geneva: World Health
Organization; 1999. http://www.who.int/occupational_health/publications/en/oehicd10.pdf.
12. National Center for Health Statistics and Centers for Medicare and Medicaid Services.
ICD-9-CM: The International Classification of Diseases, Clinical Modification, Ninth
Revision. Washington, D.C.: U.S. Public Health Service; 1991.
http://www.cdc.gov/nchs/icd/icd9cm.htm.
Other Data Collection Standards
13. Johnson CH, Peace S, Adamo P, et al. The 2007 Multiple Primary and Histology Coding
Rules. Revised August 2014. National Cancer Institute, Surveillance, Epidemiology and End
Results Program. Bethesda, MD: 2007. http://seer.cancer.gov/tools/mphrules/.
14. Surveillance, Epidemiology and End Results (SEER) Program. SEER*Rx: Interactive
Antineoplastic Drugs Database, September 2014. http://seer.cancer.gov/tools/seerrx/.
15. Johnson CH, Adamo M, Peace S, Percy-Laurry A (eds.), Hematopoietic and Lymphoid
Neoplasm Case Reportability and Coding Manual, 2015. National Cancer Institute, Bethesda, MD
20892-8316, (Hematopoietic DB).
http://seer.cancer.gov/tools/heme/Hematopoietic_Instructions_and_Rules.pdf.
Updated March 2015
ACoS CoC Cancer Program Standards
16. Cancer Program Standards, 2012: Ensuring Patient – Centered Care, v 1.2.1. Chicago:
American College of Surgeons, Commission on Cancer. https://www.facs.org/qualityprograms/cancer/coc/standards.
Quality Management
17. Standards for Cancer Registries Volume III: Standards for Completeness, Quality, Analysis,
Management, Security and Confidentiality of Data. Springfield (IL): North American Association of
Central Cancer Registries, August 2008.
http://www.naaccr.org/StandardsandRegistryOperations/VolumeIII.aspx. (Intended for central
registries, this provides detailed standards for many aspects of the operation of a population-based
cancer registry.)
18. Standards for Cancer Registries Volume IV: Standard Data Edits. North American
Association of Central Cancer Registries, Version 15.
http://www.naaccr.org/standardsandregistryoperations/volumeiv.aspx.
(This documents standard computerized edits for data corresponding to the data standards in
Volume II. The standard is primarily made available electronically as
program code and a database. Updated metafiles corresponding to changes in data standards
are issued periodically.)
Other References
19. SEER Program Self-Instructional Manual for Cancer Registrars. Bethesda, Md.: National
Institutes of Health, National Cancer Institute. http://seer.cancer.gov/training/manuals/. (Various
years.)
20. Hutchison C, Menck H, Burch M, Gottschalk R (eds). Cancer Registry Management:
Principles and Practice for Hospital and Central Registries, 3rd Edition. Dubuque, Iowa: Kendall
Hunt; 2004. http://www.ncra-usa.org/i4a/ams/amsstore/store.cfm?product_id=0.
21. Standards for Cancer Registries Volume I: Data Exchange Standards and Record
Descriptions, Version 12.1. Springfield, IL: North American Association of Central Cancer
Registries, June 2010.
http://www.naaccr.org/LinkClick.aspx?fileticket=2lNLpUSJJ2A%3D&tabid=132&mid=472.
(Intended for programmers, this provides the record layout and specifications for the standard for
data exchange, including correction and analysis formats.)
22. NAACCR Standards Implementation Guidelines. Springfield (IL): North American
Association of Central Cancer Registries, January 2015.
http://www.naaccr.org/standardsandregistryoperations/implementationguidelines.aspx.
23. Jean-Baptiste R, Gebhard IK (eds.). Series IV: Cancer Case Ascertainment. Procedure
Guidelines for Cancer Registries. Springfield, IL: North American Association of Central Cancer
Registries, February 2002. http://www.naaccr.org/LinkClick.aspx?fileticket=fsZdXjDtP78=.
24. Cancer Registries Amendment Act, Public Law. 102-515, 106 Stat 3372 (October 24,
1992). http://www.cdc.gov/cancer/npcr/npcrpdfs/publaw.pdf.
Updated March 2015
25. National Cancer Registrars Association. Information on Cancer Registry Workforce.
http://www.ncra-usa.org/i4a/pages/index.cfm?pageid=3868.
26. Cancer Facts and Figures, current year available. Atlanta, Ga: American Cancer Society.
http://www.cancer.org/research/cancerfactsstatistics/cancerfactsfigures2015/index.
27.American Cancer Society. Guide to Cancer Drugs. 2015.
http://www.cancer.org/treatment/treatmentsandsideeffects/guidetocancerdrugs/index?utm_source
=fullserve-20130801-corpcenter-healthyliving-healthyliving&utm_content=acxiom.
BASIC MEDICAL REFERENCES
1. Medical dictionary: Dorland’s, Stedman’s, Blakinston’s, Melloni’s, Taber’s. Available
through a local bookstore or medical library.
2. Textbooks on:
Practical and clinical oncology
Medical terminology
Anatomy and physiology
Pathology
Diagnostic techniques and treatment modalities
Statistics
3. Physician’s Desk Reference
RESOURCES
In-House (Internal) Resources
1. Medical Staff
a. Pathologist – assistance with questions regarding pathology reports including
histology or primary site
b. Medical Oncologist (or other clinician who treats cancer patients) – may provide
clarification for information in the medical record and may be able to act as
liaison between the cancer registry and other medical staff.
2. Oncology Clinical Trials Department
a. Information on current clinical trials
b. Assistance with follow up for patients on clinical trials
3. Community Outreach Department - Information on education and screening programs being
offered in the community
4. Quality Management Department - Assistance with quality management issues
5. Education Department – Access to cancer related medical lectures and classes
6. Hospital Library – Access to reference materials and journals
7. Reference Books (those listed above)
Updated March 2015
Local Resources
8. State’s Central Cancer Registry
a. Technical/coding questions
b. Cancer registry management
c. State laws and other reporting standards
9. Cancer Registry Professional Associations in your state or surrounding area
a. Educations meetings
b. Networking/Mentoring
10. American Cancer Society unit in your area
a. Publications – including Cancer Facts and Figures
b. Educational materials
c. Speakers for educational meetings
11. Community Colleges – offer courses in management, computer science, anatomy and
physiology, medical terminology, etc.
12. Pharmaceutical Company Representatives in your area
a. Information on current antineoplastic drugs
b. Publications
c. Speakers for educational meetings
National Resources
13. National Cancer Registrars Association
a. Publications
b. Educational meetings
c. Certification (CTR)
d. Networking/Mentoring
e. Continuing Education
14. Journals
a. Cancer related: Cancer, Oncology Times, Oncology Issues, Coping, Journal of
Clinical Oncology
b. Cancer Registry related: The Connection, Journal of Registry Management
c. Health Information Management related: For the Record, Advance
d. Those available from:
i. Commission on Cancer
ii. American Cancer Society
iii. National Cancer Institute
iv. North American Association of Central Cancer Registries
v. National Cancer Registrars Association
15. Standard setting organizations (see contact list provided in the lesson material)
The students should be familiar with the following websites (not an inclusive list):
American Cancer Society (ACS)
American College of Surgeons, Commission on Cancer (CoC)
National Cancer Database
Updated March 2015
COC FORDS Manual
CAnswer Forum
American Hospital Directory
American Joint Committee on Cancer (AJCC)
AIM doctor finder
AMA doctor finder
Cancer Index
Centers for Disease Control (CDC):
CDC Behavioral Risk Factor Surveillance System
CDC Cyber Cancer Registry
National Program of Cancer Registries (NPCR)
National Program of Cancer Registries Invasive Cancer Incidence Request
NPCR's Links to Other State Health Departments / State Registries
Certified Tumor Registry (CTR) Exam
College of American Pathologists (CAP):
Protocols Information (Required Data Elements from CAP Cancer Checklists)
Complete List of Protocols
Gray’s Anatomy
HealthLevel Seven
National Cancer Institute/SEER
Information for Cancer Registrars:
Abstracting and Coding Guide to Hematopoietic Diseases
Interactive Antineoplastic Drugs Database (SEER Rx)
Multiple Primary and Histology Coding Rules (MP/H)
SEER ICD-O-3 Coding Materials
SEER inquiry
State Cancer Profiles
National Cancer Registrars Association (NCRA)
National Comprehensive Cancer Network – Practice Guidelines
North American Association of Central Cancer Registries (NAACCR)
National Plan & Provider Enumeration System
(National Provider Identifier-NPI)
Social Security Death Index
State Health Departments and Services
World Health Organization (WHO)
Zip codes and FIPS
Updated March 2015