1. WHAT
IS A CANCER REGISTRY?
2. THE HISTORY OF CANCER REGISTRIES
3. WHY MAINTAIN A CANCER REGISTRY?
4. WHAT INFORMATION IS MAINTAINED IN THE CANCER
REGISTRY?
5. HOW ARE THESE DATA USED?
6. IS THE INFORMATION KEPT CONFIDENTIAL?
7. WHAT IS A "CANCER REGISTRAR?"
8. HOW DOES ONE BECOME A CANCER REGISTRAR?
9. HOW DOES ONE BECOME CERTIFIED?
10. WHAT IS THE FUTURE FOR CANCER REGISTRARS?
11. IS THERE A PROFESSIONAL ORGANIZATION AVAILABLE
FOR THE CANCER REGISTRAR?
1. WHAT
IS A CANCER REGISTRY?
A cancer registry is an information system designed for the collection, management,
and analysis of data on persons with the diagnosis of a malignant or neoplastic
disease (cancer). Cancer registries can be classified into three general types:
• Health care institution registries: maintain data on all patients diagnosed
and/or treated for cancer at their facility. Health care facilities report cancer
cases to the central or state cancer registry as required by law.
• Central registries: population-based registries that maintain data on
all cancer patients within certain geographical areas.
• Special purpose registries: maintain data on a particular type of cancer,
such as brain tumors.
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2. THE HISTORY OF CANCER REGISTRIES
1926 — First hospital registry at Yale-New Haven Hospital
in New Haven, CT.
1935 & 1946 — First central cancer registries
(Connecticut and California).
1956 — American College of Surgeons
requires a cancer registry for approved cancer programs.
1971 — National Cancer Act budgets
monies to the National Cancer Institute for research,
detection and treatment of cancer.
1973 — Surveillance,
Epidemiology and End Results (SEER) Program
of NCI establishes the first national cancer
registry.
1992 — Congress
establishes a National Program of Cancer
Registries (Public Law 102-515).
1993 — State laws
make cancer a reportable disease.
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3. WHY MAINTAIN A CANCER REGISTRY?
Local, state and national cancer agencies use registry data in defined areas
to make important public health decisions that maximize the effectiveness of
limited public health funds, such as the placement of screening programs.
Cancer registries are valuable research tools for those interested in the etiology,
diagnosis and treatment of cancer.
Fundamental research on the epidemiology of cancer is initiated using the accumulated
data.
Lifetime follow-up is an important aspect of the cancer registry. Current patient
follow-up serves as a reminder to physicians and patients to schedule regular
clinical examinations and provides accurate survival information.
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4. WHAT INFORMATION IS MAINTAINED IN THE CANCER REGISTRY?
• Demographic Information: Age, gender, race/ethnicity, birthplace and
residence.
• Medical History: Physical findings, screening information, occupation
and any history of a previous cancer.
• Diagnostic Findings: Types, dates and results of procedures used to diagnose
cancer.
• Cancer information: Primary site, cell type and extent of disease.
• Cancer Therapy: Surgery, radiation therapy, chemotherapy, hormone or
immunotherapy.
• Follow-up: Annual information concerning treatment, recurrence, and patient
status is updated to maintain accurate surveillance information.
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5. HOW ARE THESE DATA USED?
• Evaluate patient outcome, quality of life, and satisfaction issues and
implement procedures for improvement.
• Provide follow-up information for cancer surveillance.
• Calculate survival rates by various data items.
• Provide information for cancer program activities.
• Analyze referral patterns.
• Allocate resources at the health care facility, the community, region
or state level.
• Develop educational programs for health care providers, patients and
the general public.
• Report cancer incidence as required under state law.
• Evaluate efficacy of treatment modalities.
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6. IS THE INFORMATION
KEPT CONFIDENTIAL?
Confidentiality of patient identifying information and related medical data
is strictly maintained. Aggregate data are analyzed and published without patient
identifiers.
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7. WHAT IS A "CANCER
REGISTRAR?"
Cancer registrars are data management experts who report cancer statistics
for various healthcare agencies. Registrars work closely with physicians, administrators,
researchers, and health care planners to provide support for cancer program
development, ensure compliance of reporting standards, and serve as a valuable
resource for cancer information with the ultimate goal of preventing and controlling
cancer. The cancer registrar is involved in managing and analyzing clinical
cancer information for the purpose of education, research, and outcome measurement.
The primary responsibility of the cancer registrar is to ensure that timely,
accurate, and complete data is incorporated and maintained on all types of
cancer diagnosed and/or treated within an institution or other defined population.
Information is entered into the database manually and through database linkage
and computer interfaces.
Cancer registrars bridge the information gap by capturing a complete summary
of the patient's disease from diagnosis through their lifetime. The information
is not limited to the episodic information contained in the health care facility
record. The summary or abstract is an ongoing account of the cancer patient's
history, diagnosis, treatment, and current status.
In addition to managing and reporting cancer data, registrars serve in multiple
other professional activities. Cancer registrars participate in cancer program,
institution, and community benefit activities as part of the active leadership
structure. Registrars provide benchmarking services, monitor quality of care
and clinical practice guidelines, assess patterns of care and referrals, and
monitor adverse outcomes including mortality and co-morbidity. Cancer registrars
can provide consultative services on many issues including registry management
and program standards.
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8. HOW DOES ONE BECOME A
CANCER REGISTRAR?
Traditionally, cancer registrars were trained on the job. Today, formal education
programs at colleges around the country teach cancer data management. Curricula
include, but are not limited to, cancer and its management, medical terminology,
anatomy and physiology, biostatistics and epidemiology, cancer data abstracting,
database record management, cancer program management, and cancer registry
procedures. In addition to formal college courses, training is available from
programs that vary from one to two weeks in duration and provide an intensive
training experience in one or more aspects of registry operations. Training
courses combined with on-the-job learning remains a viable route for a career
in the cancer registry profession.
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9. HOW DOES ONE BECOME CERTIFIED?
The National Cancer Registrars Association's (NCRA) Council on Certification
administers an examination during two 2-week testing windows. Candidates must
meet eligibility requirements that include a combination of experience in the
cancer registry field and educational background. After successfully passing
the certification examination, the Certified Tumor Registrar (CTR®) credential
is awarded. Persons who have successfully completed the certification examination
have demonstrated that they have met or exceeded the standard level of experience
and technical knowledge required for effective cancer data management. To maintain
a certified status, the current continuing education requirements of NCRA must
be met. The required continuing education and training keeps the CTR abreast
of new developments in the field of oncology and registry data management.
Thus the registrar's knowledge and skills are continuously enhanced. For more
information concerning certification, visit the NCRA web site at: www.ncra-usa.org
or contact ctrexam@ncra-usa.org.
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10. WHAT IS THE FUTURE FOR CANCER REGISTRARS?
The evidenced-based medicine of today recognizes the skills and abilities of
the cancer registrar. The increase in the number and types of health care facilities,
central registries, consulting firms and registry software companies make the
demand for qualified cancer registrars greater than ever. There is tremendous
potential for growth in government agencies, insurance, pharmaceutical and
other health care industries as accurate, timely data increasingly impacts
cancer control efforts. Cancer registrars who possess management and administrative
skills, knowledge of medical sciences, programming, database management, data
retrieval and analysis will find a ready market for those skills.
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11. IS THERE A PROFESSIONAL ORGANIZATION AVAILABLE FOR
THE CANCER REGISTRAR?
The National Cancer Registrars Association (NCRA), chartered in May 1974 and
incorporated in October 1976, is a non-profit, professional organization. NCRA
promotes accurate, timely data and advances professional development. The purpose
of NCRA is to provide educational opportunities for continuous learning; advance
knowledge of all new technologies that influence cancer data; establish standards
of education; promote the value of a certified registry professional; and support
professional standards and ethics. Over 3100 members represent the various
types of institutions that have an interest in cancer management.
NCRA sponsors an annual conference offering educational sessions designed to
improve registrars' knowledge and professional expertise. In addition to the
national organization, state and local associations conduct meetings and workshops
for cancer registry professionals. Satellite teleconferences also provide educational
opportunities.
NCRA has formal liaisons to the following organizations:
• American Joint Committee on Cancer (AJCC)
• Commission on Cancer of the American College of Surgeons (COC)
• North American Association of Central Cancer Registries (NAACCR)
• National Board for Certification of Registrars (NBCR)
• National Coordinating Council for Cancer Surveillance (NCCCS)
A special appointment may be made for representation at specific meetings or
events to foster relationships, promote NCRA membership and to interact or
represent NCRA members regarding special issues. These organizations may include:
• American Cancer Society (ACS)
• American Health Information Management Association (AHIMA)
• Association of Cancer Executives (ACE)
• Association of Clinical Oncology Administrators (ACOA)
• Association of Community Cancer Centers (ACCC)
• Centers for Disease Control (CDC)
• College of American Pathologists (CAP)
• Joint Commission on Accreditation of Healthcare Organizations (JCAHO)
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