1. department of health and human resources
Reflections of Change by
Ryan Intlekofer, RN, CTR
Division of Cancer Prevention and Control
National Center for Chronic Disease Prevention and Health Promotion
Centers for Disease Control and Prevention (CDC)
department of health and human resources

2. acknowledgements

3. The Journey
Where we started
Where we are
Where are we going ?

4. Beginning History of Cancer Registration
Europe
Cancer was first documented as a cause of death in 1629 in the “Bills of Mortality”
published annually in England.
The first known systematic collection of information on cancer was the general census of cancer in London – 1728
The first reliable cancer statistics appeared in mortality figures for the city of Verona in 1842.

5. History of Cancer Registration in the U.S.
1913 – North American Surgeons
1930 – Hospital Based Registries
1932 – ACoS Published First Standards
1933 – 140 Cancer Clinics were approved by the ACoS
1941 – Connecticut Cancer Registry
In 1913 the fourth annual Congress of North American Surgeons charged the cancer campaign committee with the collection of data on the use of radiation therapy in the management of gynecologic malignancies. The analysis demonstrated that surgery and radiation therapy were equally effective in the management of early stage cancers of the uterine cervix. The College of Surgeons introduced the concept of the cancer registry with the establishment of a bone sarcoma registry. By the 1930’s the bone sarcoma registry had grown to include other types of cancer and the ACOS published the first standards in 1932 for the evaluation of cancer clinics and registries and initiated clinical surveys and an approvals process for cancer clinics. In 1933, 140 of 200 cancer clinics were approved by the ACoS. The mandates of this regulatory process were in part responsible for the establishment of centralized, population-based cancer registries. Among the first of these was the population based Connecticut Cancer Registry which was established in the 1940’s.
Many individual groups across the world were beginning to investigate cancer.

6. Chihuly at the Atlanta Botanical Gardens.

7. Inventions 1938 – ball point pen
An important invention. I think it was possible that registrar’s were told, having a ball point pen will make your work faster and easier. Of course that was after a few years of being told to make do with what they had.
Registrar’s are resourceful!

8. Setting Standards
1956 – CoC approval standards were revised and cancer registries were designated as mandatory components of Commission approved cancer programs.
1950’s – Also marked the beginning of the End Results Program. Continuous collation of cancer registry data was begun.
By 1953 most registrar’s did have ball point pen. The 1953 version of the ACoS Cancer Registry Manual provided a basic guide for hospital personnel in the implementation and operation of a hospital cancer registry. This manual was 32 pages long and covered all aspects of the hospital cancer program. In 1956, the CoC made the cancer registry mandatory component for the approved cancer program.
1950’s also marked the beginning of the End Results program. From the National Cancer Institute sponsored this group. The End Results Group was a set of medical school affiliated hospitals throughout the US. Those hospitals collected survival data on cancer patients diagnosed or treated at their facility.
At that time, the cancer registry abstract may have been less than a page long with only a small amount of data recorded. In many cases the treatment line was – yes treatment given or no – treatment not given.
Cancer was nearly always fatal. And second primary malignancies were rare – most often the patient did not live long enough to develop a second.
Treatment when given was brutal. Surgeries were quite disfiguring. Radiation caused severe burns and chemotherapy included such agents as Nitrogen Mustard.

9. Things were starting to come together

10. Continued Expansion 1973 – SEER program 1974 – NCRA
1983 – CTR credentialing
1989 – National Cancer Data Base
1990 – NAACCR
1992 – NPCR

11. SEER
Established in 1973
Case ascertainment began in the states of Connecticut, Iowa, New Mexico, Utah, and Hawaii, and the metropolitan areas of Detroit and San Francisco-Oakland.
14% population coverage
SEER Expansion – Current
26% population coverage
The Survival Epidemiology and End Results program was an extension of the End Results Group. The National Cancer Act of 1971 launched the nations War on Cancer. The act directed NCI to collect, analyze and disseminate all data useful in the prevention, diagnosis and treatment of cancer and report those findings to congress. The SEER program was developed. Seer case ascertainment began in 1973 in the states of Connecticut, Iowa, New Mexico, Utah and Hawaii and the metropolitan areas of Detroit and San Francisco – Oakland.

12. NCRA – CTR Established in 1974 CTR 2004 – 4,000 members
Education Foundation established
CTR
Paper to Web-based exam

13. NCDB
Established in 1989 to serve as a comprehensive clinical surveillance resource about cancer care in the US.
First used to track and compare treatment of most types of cancer.
Data Cycle

14. North American Association of Central Cancer Registries (NAACCR)
Uniform data standards
Education and training
Certification
Data aggregation and publication
Promotion of cancer surveillance data use

15. National Program of Cancer Registries (NPCR)
1995+
45 States, 3 territories, District of Columbia
96% population coverage
SEER
NPCR
NPCR/SEER

16. Registrars remain somewhere in the midst trying to figure it all out and trying to comply with all the new regulations and requests for data.

17. Additional Tools SEER Self Instructional Manuals ICD-0
SEER Program Code Manual
SEER Extent of Disease Manual
SEER Summary Staging Manual
AJCC Cancer Staging Manual
CoC DAM, ROADS and FORDS
To comply with the established regulations, updated and more extensive manuals, regulations and tools were added to the cancer registrar’s list of necessary work related items. The SEER Self Instructional Manuals have been revised over the years and still provide a very comprehensive tutorial in cancer registration. The ICD O first edition in 1976 was 131 pages long, the current ICD O3 has 240 pages, before errata.
I know most of you are also very familiar with some if not all of these other tools.
Why has this been happening?
All of this happened because of the work that had been done by the registrar. Because of the solid information given to researchers – the need for better diagnostic and treatment techniques was recognized and these techniques were developed. Vast advances have been made in diagnostic radiology and diagnostic pathology. And of course, treatment modalities were changing as well. With all of these advances, more information was readily available and more information was needed to further define the type and stage of disease – and what treatments are effective or not effective.
These changes required change in cancer registration. It was no longer acceptable to record – treatment - yes, treatment - no. We had been effective in our work - Some types of cancer had become curable and others controllable.
Cancer was becoming more of a chronic disease.
Treatment modalities have improved

18. Cancer Data Collection
What changes have been made in cancer data collection?
Fountain pen to ballpoint pen
Card files to computer generated suspense lists
Paper abstracts to computer database files
Manually counting numbers of cases to computer generated totals

19. Computerization Personal computers Cancer Registry Software
DOS to Windows
Networks
Linkages
Really none of this would have been possible without computerization and the addition of powerful software. Remember going from paper to desktop computer? With the changes in requirements, computerization was really necessary just to keep up. Although, I do remember being told that the computer should make our work faster and easier and would eliminate the need for more staff.

20. Where are we now
2001 – ICD-O 3 Implemented new case reportability standards for the hematopoietic diseases
2004 – Benign Brain Reporting
2004 – Collaborative Stage Reporting
On January 1, 2001, cancer registrars began coding primary site and morphology terms using the ICD O 3. Many hematopoietic diseases were given malignant nomenclature and over 200 new terms and synonyms were added in the narrow range of codes from M-9590 to M-9989.
Of course, 2004 brought a lot of change with the addition of benign brain tumor reporting and the initiation of Collaborative stage reporting. The benign brain reporting was essentially initiated through congressional mandate due to lobbying efforts by a group of citizens who had seen the devastation of this “benign” process and who felt it should be monitored as carefully as malignant tumors are.
Be careful what you wish for as ---Collaborative stage reporting was developed in response to complaints by registrars : why can’t the reporting agencies all agree on what the reporting requirements are.
I was extremely grateful to have begun my registry career in a ACoS approved hospital in a SEER state. We collaborated with the SEER registry and in so doing – learned how to code with SEER rules as well as the ACoS and AJCC requirements.

21. Data Submission Hospital Cancer Registry State Cancer Registry NPCR
In addition to receiving data from the various reporting sources,
like the hospital CLICK
The registrar in the central registry also receive data
from other central cancer registries—called case-sharing.
The registrar in the central cancer registry may report these data to
any or all of several standard setters, including…
CLICK
… The National Program of Cancer Registries or NPCR at the CDC
… The Surveillance Epidemiology and End Results Program or SEER at the NCI
… The North American Association of Central Cancer Registries or NAACCR.
When data are reported,
they do not contain identifying information
and must be reported according to the CDC, NCI, or NAACCR standards.
Hospital Cancer Registry
State Cancer
Registry
NPCR
SEER
NAACCR

22. Add collaborative stuff

23. Where are we going?
Part of where we are – and part of where we have been is where we are going.
Electronic health record
HL-7 format for data
Electronic path reports – and all
More CoC approved facilities
NPCR
Include other racial and ethnic populations
Estimates of case counts at the national and regional levels
Trend data
Expand population-based coverage
Pediatric cancers
Mortality data

25. Contact Information