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Cancer Registries Objectives • Cancer registry definition • Purpose of the cancer registry • The cancer registration process • Importance of the cancer registry • Cancer registrars and their responsibilities • Types of cancer registries Summary Cancer registries collect, store, manage, and analyze data on people with cancer. They establish and maintain a cancer incidence reporting system, serve as an information resource for cancer research, and provide information to assist public health officials and agencies. For example, physicians need cancer data to learn more about the causes of cancer to be able to detect it earlier. Cancer registry data also helps determine the approximate percentage of people who will still be alive within a certain time period from diagnosis.

Cancer registrars are trained to collect accurate, complete, and timely data. There are three types of cancer registries: hospital registries, state registries, and special cancer registries. Topics and References The American Cancer Society offers information and statistics on all types of cancers: The National Institutes of Health (NIH) provides information on all health topics, including cancer. NIH website: NIH article on cancer costs projection for 2020: Abstracting Objectives • Cancer registry abstract definition • What information (data) is collected • Rules that govern abstracting • How the collected data is used Summary An abstract is a record that contains information about each patient from the time of diagnosis and continuing throughout his or her life.

The abstract includes patient data about demographics, diagnostic studies, cancer staging, treatment, and follow-up. When they create and update abstracts, cancer registrars must follow abstracting rules set by their individual state central registries. Hospitals that are accredited through the American College of Surgeons Commission on Cancer (ACoS/CoC) also follow ACoS/CoC abstracting rules and standards. Cancer registries transmit abstract data to their state’s cancer registry and, if the facility is ACoS/CoC-accredited, to the National Cancer Data Base (NCDB). Topics and References Search the Internet for your state cancer registry.

What agencies does it follow for coding structures and requirements? The North American Association of Central Cancer Registries Data (NAACCR) Standards and Data Dictionary for abstracting: The National Program of Cancer Registries (NPCR) standards for abstracting: Commission on Cancer quality of care measures: Comparison benchmark reports and survival reports: Coding Objectives • Coding manuals and applications used in the registry • The importance of standardization Summary Cancer registries use multiple coding applications and manuals to abstract their data. The Facility Oncology Registry Data Standards (FORDS) instruct abstractors on the types of tumors that require data collection and define how to accurately complete and code most fields of an abstract.

The International Classification of Disease for Oncology (ICD-O) is used to code the histology, behavior, and grade of the patient’s tumor. The American Joint Committee on Cancer (AJCC) Staging Manual allows for correct staging of the tumor, nodes, and distant metastasis. The Collaborative Staging Manual is used to derive a stage after completing multiple questions about the tumor extension and how that information was identified. The Multiple Primary and Histology Rules promote consistent and standardized coding by cancer registries to determine the number of primaries and histology codes. The Surveillance, Epidemiology and End Results (SEER) Summary also codes the extension of the tumor using a combination of clinical and pathological information.

The Hematopoietic Database helps determine if a patient has a single or multiple blood and lymphoid neoplasms. Use of these coding applications and manuals improves the accuracy and quality of cancer registry data. Topics and References Collaborative Stage Data Collection System: Cancer Staging Objectives • Staging definition • The importance of staging • Staging sources • Major staging systems Summary According to the theory of cancer growth, cancer originates in a single cell. The cell continues to divide and grow in the organ of origin, spreads to adjacent tissue or regional lymph node drainage areas, and then spreads to distant organs or structures. Cancer can spread directly from the organ of origin through the bloodstream into distant organs without involving adjacent organs and regional lymph nodes.

Staging is a common language developed by medical professionals to communicate information about cancer to others. It describes the severity of an individual’s cancer based on the extent at the original tumor (the “siteâ€), and how far the cancer has spread. Two staging systems are discussed in this presentation: SEER Summary Stage and AJCC TNM Stage. Cancer staging is important for several reasons. It helps medical professionals adequately assess the extent of cancer and determine the most appropriate treatment to cure the disease, decrease the tumor burden, or relieve symptoms.

Staging is also used to estimate the prognosis for individual patient Topics and References Terminology Review Basement membrane : a sheet of material upon which the basal surfaces of epithelial cells rest Blood vessels : arteries, capillaries, and veins conveying the blood Capillary : one of the microscopic blood vessels joining arterioles and venules Distant metastasis : a tumor that develops away from the site of origin Epithelial cell : one of the closely packed cells forming the epithelium Epithelial lining of vessel : blood and tissue fluids exchange various substances across these walls Epithelium : membranous tissue covering internal organs and other internal surfaces of the body Lymph node : small, oval structure that filters the lymph and fights infection Lymph vessels : capillaries, collecting vessels, and trunks that collect lymph from the tissues and carry it to the bloodstream.

Parenchyma of organ : the essential or functional elements of an organ, contained in and supported by the stroma. Stroma : the supporting tissue of an organ Methods of cancer spread: • Adjacent tissue • Lymphatic wall • Blood-borne metastasis American Joint Committee on Cancer (AJCC) Staging: Case Finding Objectives • Case finding definition • Case finding methods • Importance of case finding Summary Case finding is a system for locating every patient who is diagnosed and/or treated with a reportable diagnosis at a facility. All registries must perform case finding to ensure all applicable cases are reported. Almost all malignant cancer cases, as well as some benign central nervous system tumors, are required to be reported to the state.

Cancer registries may use different source documents for case finding, but the procedures involved in case finding are similar. Case finding is essential for complete reporting. It will be helpful to review. An Introduction to Cancer Registry: Glossary of Terms for the following terms before you view this presentation: • Basal and squamous cell skin cancer • Benign • Borderline tumors • Carcinoid tumors • Radiation oncology • Uncertain behavior neoplasms Topics and References Most cancer registry software programs now have automatic merge capabilities to enter cases to be reviewed as a potential reportable case. This saves time, eliminating the need for the cancer registrar to manually check to see if a case has already been entered into the database.

Patient Follow-Up Objectives • Follow-up definition • Follow-up goals • Methods used to obtain follow-up information Summary Patient follow-up provides ongoing surveillance to determine if treatment has worked. Specifically, registrars look for—and enter into a patient’s abstract—information about patient status, cancer status, recurrent disease, additional treatment, and new types of cancer the patient may have been diagnosed with. Cancer registrars perform follow-up for each patient on an annual basis. Each month, registrars compare a list of patients requiring follow-up to various facility records that detail hospital admission, outpatient encounters, and clinic visits. If they find no new information, registrars will send a letter to the patient’s managing physician requesting the date of the patient’s most recent visit.

At times, a letter may be sent to the patient to determine which physician he or she sees for annual exams. Topics and References To learn more about the cancer burden of the United States, visit You’ll find fact sheets and incidence, mortality, and prevalence information. Data Submission Objectives • Purpose and benefit of submitting data • Type of data submitted • Standard-setting organizations • The cancer registrar’s role in data submission Summary By law, all cancer registries must submit data to their state’s cancer registry. Additionally, hospital cancer programs accredited by the Commission on Cancer (CoC) submit their data to the National Cancer Data Base (NCDB) on an annual basis. Cancer registrars are essential to the data submission process.

They compile the data and run edits to ensure there are no errors in the abstracts. Once the data is clean of errors, it is submitted electronically. No patient-identifying indicators are sent to NCDB. Topics and References What does the NCDB do with the data? • NCBD data is shared with all registry facilities that submit to it. Registries can access multiple reporting tools that allow them to compare their data to that of other facilities. • NCDB data is shared with the public at Users can review: 1. cancer cases reported to NCDB by tumor type and stage 2. benchmark reports on numerous sites and variables Confidentiality & Release of Information Objectives • Confidentiality definition • Relation to the cancer registry • The law and confidentiality • The cancer registrar’s role • When and why registries release information Summary Cancer data is highly confidential, and it’s critical that all cancer registry staff maintain that confidentiality.

Cancer registrars have access to patients’ medical records to transfer the information into registry databases. Cancer registry functions fall under the Operating Rules portion of HIPAA. These rules allow health care facilities to share the first course of treatment and follow-up of shared patients. The 2009 economic stimulus bill requires registries to account for disclosures of information at a patient’s request. Individuals and cancer registries can be subject to penalties if disclosures are improperly released, just like other health care employees.

Cancer Committee Objectives • Cancer Committee definition • Cancer Committee responsibilities • Cancer Committee members • Leadership roles and coordinators • The cancer registrar’s role Summary Commission on Cancer (CoC) standards help ensure the structures, processes, and outcomes necessary for the delivery of quality cancer care are in place for accredited hospital cancer programs. One component of that structure is the Cancer Committee. A Cancer Committee is a multidisciplinary leadership body that’s responsible and accountable for planning, implementing, and improving their facility’s cancer program activities. A cancer program’s success depends on the Cancer Committee effectively setting and monitoring goals.

Committee members include physicians and allied health professionals; the cancer registrar is a required member and updates the committee using multiple reports. This committee must meet at least quarterly. Topics and References Cancer Conferences are also known as Tumor Boards. Cancer Conference Objectives • Purpose and benefit of cancer conferences • Requirements • The cancer registrar’s role • View a real Cancer Conference meeting Summary A Cancer Conference provides the opportunity to have a multidisciplinary discussion focused on current diagnoses and treatment standards, with patients’ well-being and care as the primary focus. During Cancer Conference meetings, oncologists, pathologists, radiologists, physicians, and other health care staff discuss actual patient cases—with the goal of determining the best treatment plan for the patient.

Discussions cover each patient’s history of illness and their radiologic studies and pathology slides, cancer stage, prognostic factors, possible treatments, and clinical trial options. The video in this presentation demonstrates an actual Cancer Conference meeting at Torrance Memorial Medical Center in Torrance, California. Topics and References Cancer Conferences are also known as Tumor Boards. Quality Objectives • Definition of quality • Benefits of quality data • Commission on Cancer quality objectives • The cancer registrar’s role Summary Quality is the ability of a product, service, or process to meet customers’ expectations and provide the intended value. High-quality cancer registry data are essential to accurately assess treatment outcomes and patient survival.

In cancer registries, the term “quality improvements†refers to the actions taken, processes implemented, or services created to improve patient care. The Commission on Cancer (CoC) has four objectives pertaining to quality: establish standards to ensure quality cancer care, collect high-quality data, use data to measure cancer care quality, and develop effective education interventions. Cancer registrars work closely with a Quality Improvement Coordinator to develop and assist with quality studies, which measure the facility’s performance and outcome measures. Become a Certified Tumor Registrar Objectives • Eligibility requirements to sit for the Certified Tumor Registrar (CTR) examination • Career opportunities for cancer registrars Summary After students hear about the cancer registry field, they often ask how to become a cancer registrar.

To take the Certified Tumor Registrar (CTR) examination, candidates must meet education and experience eligibility requirements. The National Cancer Registrars Association Council on Certification has defined three routes for achieving this goal, which are discussed in the presentation. Certified Tumor Registrars enjoy career opportunities in many settings, from hospitals and state registries to national cancer programs, and even consulting firms. Topics and References Completion of an NCRA-accredited program fulfills specific eligibility requirements for CTR exam candidates. All NCRA-accredited programs have undergone extensive review by NCRA’s Formal Education Program Review Committee.

Some programs offer distance learning through online coursework. The current list of formal education programs is available at CTR Exam Eligibility Flowchart: The National Cancer Registrars Association is a not-for-profit association representing cancer registry professionals and Certified Tumor Registrars. NCRA’s primary focus is education and certification with the goal of ensuring all cancer registry professionals have the required knowledge to be superior in their field. Worldwide, there are more than 5,000 NCRA members and CTRs.

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Introduction

Cancer registries are pivotal institutions that collect, analyze, manage, and disseminate data related to cancer cases. They not only report cancer incidence but also support public health officials, researchers, and healthcare providers in understanding cancer patterns, treatment outcomes, and survivorship statistics. This document outlines the objectives, purposes, processes, and significance of cancer registries, as well as the roles and responsibilities of cancer registrars.

Definition of a Cancer Registry

A cancer registry is a systematic collection of data about cancer diagnoses, treatment, and outcomes. These registries capture information from the time of a patient's diagnosis throughout the course of their treatment and follow-up care. They can be categorized into three main types: hospital registries which operate at a single healthcare facility, state registries that encompass larger geographic regions, and national special cancer registries that focus on particular cancers or populations (American Cancer Society (ACS) 2022; National Cancer Institute (NCI) 2020).

Purpose of the Cancer Registry

The primary purpose of cancer registries is to maintain a comprehensive database that facilitates the monitoring of cancer incidence and survival rates. This information is critical for several reasons:
1. Research and Surveillance: Cancer registry data serves as a crucial resource for epidemiological studies (American Society of Clinical Oncology (ASCO) 2023). Researchers utilize this data to identify risk factors, develop new treatment protocols, and evaluate the effectiveness of interventions.
2. Cancer Control Planning: Public health officials depend on cancer registry data to develop effective cancer control strategies, allocate resources, and track trends over time (National Institutes of Health (NIH) 2021).
3. Clinical Decision-Making: Cancer data aids healthcare professionals in making informed decisions regarding patient management, treatment options, and prognosis (CoC 2023).

The Cancer Registration Process

The cancer registration process entails several critical steps:
1. Case Finding: Identifying all patients diagnosed or treated for reportable cancers using various source documents, including pathology reports, medical records, and treatment databases (SEER 2020).
2. Abstracting: This step involves collecting detailed information on each diagnosed case including demographics, tumor characteristics, treatment information, and follow-up data. Abstracts must adhere to stringent coding and documentation guidelines set by local and national standards (NCRA 2023).
3. Data Submission: Registrars compile and submit collected data to state cancer registries and, where applicable, to the National Cancer Data Base (NCDB) (National Program of Cancer Registries (NPCR) 2020).
4. Follow-Up: Continuous monitoring of patients is necessary to gather information on treatment responses, recurrence, and other vital outcomes (NCI 2022).

Importance of the Cancer Registry

The importance of cancer registries cannot be overstated. They:
1. Enhance Patient Care: By providing healthcare providers with access to aggregated data, registries facilitate informed treatment decisions and personalized care plans (CoC 2023).
2. Support Cancer Research: Registries are a fundamental resource for researchers, providing large datasets necessary for statistical analysis and hypothesis testing in cancer research (SEER 2021).
3. Inform Public Health Policies: Cancer registry data aids policymakers in understanding cancer’s burden on populations, leading to better resource allocation and public health initiatives (World Health Organization (WHO) 2022).

Cancer Registrars and Their Responsibilities

Cancer registrars play a critical role in ensuring the accuracy and completeness of cancer data. Their key responsibilities include:
1. Data Collection: Registrars are trained professionals responsible for gathering clinical data from various sources, ensuring consistency and accuracy in documentation (NCRA 2023).
2. Data Management: They manage datasets, ensuring compliance with coding standards, and perform quality assurance checks to identify and rectify discrepancies (ACS 2022).
3. Collaboration with Healthcare Teams: Registrars work closely with clinical teams, providing insights based on registry data that can improve patient outcomes (CoC 2023).

Types of Cancer Registries

Cancer registries can typically be divided into three types:
1. Hospital Registries: These collect data from hospitals and other healthcare facilities, focusing primarily on the patients treated within these settings.
2. State Registries: These aggregate data across hospitals within a state, mandated to collect all cases of reportable cancers.
3. National Registries: These focus on specific diseases or populations, providing a broader overview on a national level, like the NPCR and NCDB (NIH 2021).

Summary

In summary, cancer registries are an integral component of cancer control and public health management. They provide vital data that enables researchers to understand cancer dynamics, informs clinical practices, and shapes health policy decisions.

References

1. American Cancer Society. (2022). Overview of Cancer Data and Surveillance.
2. American Society of Clinical Oncology. (2023). Cancer Research and Public Health Implications.
3. Commission on Cancer. (2023). Cancer Registrars: Quality Data for Better Outcomes.
4. National Cancer Institute. (2020). Cancer Surveillance: An Overview.
5. National Cancer Institute. (2022). Patient Follow-Up Procedures in Cancer Registries.
6. National Program of Cancer Registries. (2020). Data Submission Requirements for Cancer Registries.
7. North American Association of Central Cancer Registries. (2023). Abstracting and Coding Standards.
8. Surveillance, Epidemiology, and End Results Program. (2021). The Importance of Cancer Registry Data.
9. World Health Organization. (2022). Global Cancer Data and Statistics: Trends and Projections.
10. National Cancer Registrars Association. (2023). Training and Certification for Cancer Registrars.
This comprehensive overview of cancer registries illustrates their essential role in enhancing cancer care, driving research, and informing public health policies. Understanding their operations and significance is crucial for healthcare professionals and policymakers alike.