Cancer Registry (Oncology Data Services)

Loren Hudson, BA, CTR Cancer Registry Supervisor

Sandra Jaquez Cancer Registrar, CTR

The primary responsibilities of a hospital based Cancer Registry are to 1) identify all cancer patients newly diagnosed and/or treated at their facility; 2) analyze and enter specific information about that patient's diagnosis and treatment into the registry's database; and 3) eventually distribute this wealth of information to the state of Texas (as mandated by law), the American College of Surgeons (ACoS - as an accredited hospital cancer program requirement) and to other medical or hospital based individuals as requested. Cancer Registry personnel also coordinate Cancer Conference meetings, assist other Del Sol Medical Center Cancer Program team members with events such as cancer screening programs, support group assistance, and function as staff for the hospital's Cancer Committee. The Cancer Registry is an essential component of any hospital's cancer program.

Identifying newly diagnosed or treated cancer patients:

Newly diagnosed cancer patients are in general identified by the Cancer Registry personnel through the hospital's Pathology Department and from a report called a disease index. When a pathologist identifies a tissue sample as malignant, he sets the report and sample aside for review and confirmation by a colleague. After verification, reports with an established malignancy are forwarded to the cancer registry. These reports are then reviewed and processed by the Cancer Registrar. The disease index report helps the registrar to identify patients with malignant disease that is not diagnosed by a biopsy or surgery. This report selects cases by identifying ICD-9 cancer related codes. The list of patients are then compared to the current database and then reviewed for cases that fit the criteria to also be processed in the registry's database. This can sometimes be a time consuming process, but it is the best method to insure that all cancer-diagnosed patients are identified and reported.

At initial diagnosis, most patients will be assigned a stage of disease. This classification can range from 0 to IV and assists physicians to decide the best course of treatment indicated for the patient. The two main staging systems used throughout the world are the SEER staging system (primarily used by government and central registries) and the AJCC TNM classification of disease. (AJCC = American Joint Commission on Cancer.) Most hospital based cancer registries, including Del Sol Medical Center, use this system. This system reviews the extent of the tumor (T ), regional node involvement (N ), and distant metastasis ( M.) Staging forms are placed on the patient's medical record and completed by the diagnosing or treating physician.

Analyzing and entering information into the cancer registry database:

The next step in processing cancer patient data is simply entering basic patient information into our software program. This is done approximately within four to six weeks of the patient's initial diagnosis. This process is called "accessioning." Then, any further information on the patient is compiled with the original data to be analyzed approximately five to six months after initial diagnosis. This time gap is essential for the registrar to enter an accurate and complete account of the patient's diagnosis and treatment process. At that time, all available patient information is analyzed or "abstracted." The specific information previously mentioned is then entered into the patient's report or "abstract." This data includes patient and family medical history, symptoms at diagnosis, diagnostic tests used to identify the patient's illness, primary site of the malignancy, type of cancer, and treatment recommended and/or completed. The patient's current status, i.e. alive with disease, disease free, expired with malignant disease, etc., is also documented on an annual basis.

The cancer registrar, to assure the accuracy of the information entered, closely reviews patient's medical records. Data quality is maintained by review and comparison of the abstract report to the patient's medical record by the Cancer Registry Supervisor as well as by a physician. The Cancer Program's physician quality assurance advisor reviews a minimum of ten percent of the hospital's total database for the current year.

Distribution of cancer information:

Cancer Registries provide cancer statistical data to various organizations and individuals. State and national agencies combine information received from hundreds of cancer registries to analyze data with an ultimate purpose of halting preventable cancers and controlling the progression of the malignant disease process. Most cancer registries today report cancer data to their state's department of health on a regular schedule throughout the year. Hospital's seeking or maintaining an accredited American College of Surgeons Cancer Program report their data to ACoS on an annual basis through their National Cancer Database (NCDB)"call for data." Essentially, almost all of the statistical data that you read and review about cancer types, diagnosis, treatment and outcome initially came from a Cancer Registry.

The Cancer Registrar:

Cancer Registrars are data management experts. Their profession requires knowledge of cancer diagnosis and its treatment, medical terminology, anatomy and physiology, biostatistics and epidemiology, cancer data retrieval, database management, a working knowledge of multiple computer software programs, cancer program management and cancer registry procedures. All of these skills allow the cancer registrar to bridge the information gap by providing a complete summary of the disease process of the cancer diagnosed patient from diagnosis through their lifetime.