- 1) What is cancer registry?
- 2) The history of cancer registries
- 3) Why maintain a cancer registry?
- 4) What information is maintained
in a 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?
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 ins tu on registries: maintain data on all pa ents diagnosed and/or treated for cancer at their facility. Healthcare 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.
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.
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.
- 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.
- 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.
Confidentiality of patient identifying information and related medical data is strictly maintained. Aggregate data are analyzed and published without patient identifiers.
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.
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.
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 keep 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 website at www.ncra-usa.org or contact firstname.lastname@example.org.
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.
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.