Utilization of Cancer Registrars in Clinical Research

Rossio Y. Rodriquez, HIM, CTR 
Director, Data Management 
Proton Collaborative Group

What is a Cancer Registrar?

A cancer registry is the information system designed for the collection, management, and analysis of data on a person’s diagnosis that contains etiology, diagnosis, treatment of cancer, and patient’s status for as long as the patient is alive. The information in the registry is entered by a cancer registrar.

The men and women in this job role are very dedicated, detail oriented, and passionate about their oncology role.  They utilize many skills in their everyday tasks. However, one important skill that cancer registrars use the most is critical thinking. This is vital when reviewing a patient’s medical chart and putting together their cancer history into one abstract that is later used for cancer statistics. The role of the cancer registrar has a tendency to be overlooked as they are not in the frontline when it comes to the patient’s cancer care.   

How Can a Cancer Registrar be Utilized in Clinical Research?

Cancer registrars are valuable in terms of cancer statistics as they collect the etiology, diagnosis, and treatment of cancer, as well as having specific procedures in capturing the follow up of the patient if he/she does not return to their facility.   They work closely with all other cancer registrars in and out of state, as well as physicians, nursing staff, health care administration, and oncology researchers.  

The cancer registry department is responsible for gathering data in a timely manner and entering it manually into a registry database purchased by their facility.   They also work with database linkage and computer interfaces to submit all the cancer cases for that specific year to the state department of health.  All the information that is gathered is from the patient’s medical chart at that facility, as well as outside records from other facilities where the patient was receiving treatment.  The rules of abstracting for a cancer registry come from the Facility Oncology Registry Data Standards (FORDS) manual, American Joint Commission on Cancer (AJCC) manual, and other oncology resources. This information is extremely accurate, standardized, and well recorded. This data can therefore be very useful when attempting to acquire data for clinical research.

Transitioning from a Cancer Registrar into a Clinical Research Setting

The work of a cancer registrar is very similar to work done by data entry personnel in a clinical research setting. The transitioning from cancer registrar into clinical research can be very intimidating to someone who has no previous research experience, however, the knowledge base they obtain working in oncology will make for a smooth transition as the two worlds are not very different. 

The best way to transition a job as a cancer registrar into clinical research would be to start out as a data coordinator, which consists of abstracting all subjects’ cancer cases who participated on any of the clinical trials.  This task is exactly what a cancer registrar is trained to do so the skill set is easily transferable.   A cancer registrar is familiar with patient medical records and extracting data, understanding the patient’s cancer story and then abstracting the information into specific questions the case report forms request for the research trial. 

There are some differences between abstracting the research cases versus abstracting cancer registry cases. However, the differences are not substantial enough to prevent an individual from achieving the end goal: to provide correct data for statistical analysis for a specific cancer diagnosis to assist in better treatment moving forward.

One of the few differences between the two roles is that for the cancer registrar, the state law requires all cancer cases, both diagnosed and treated at the facility, to be reported within a certain timeframe.  The questions on the cancer registry forms were outlined by the state so that everyone who is reporting those cases are completing the same questions across the board. This provides consistency as the subjects are seen at multiple facilities for treatment. This process was made standard so that the state could cross-reference each abstract submitted on a particular patient from multiple institutions.  The data collected is very detailed and specific about the disease such as tumor size, lymph node involvement, metastatic disease, site-specific factors, as well all treatment that was given to the patient.   For research, the case report forms are specific to the collection of data specified in the clinical trial as well as any other information agreed upon by the clinical investigators and sponsor that is deemed useful for statistical analysis for new cancer treatments, devices, drugs and in some instances for insurance companies.

Conclusion for Transition and Benefits of a Cancer Registrar

A new stand-alone radiation facility, or smaller cancer center, could create a dual role to utilize a cancer registrar to report cancer cases to the state as well as abstract cases for a research study.  The dual role may not be feasible for a larger setting due to the number of subjects, however, this opportunity for a newly certified cancer registrar wanting to expand their career would be beneficial.  

For cancer cases, staging that identifies the severity of the cancer is very important in analyzing the data and a cancer registrar has the knowledge to assist in staging cases.  Cancer registrars must obtain extensive oncology training to meet certification requirements whereas staff hired in most oncology research coordinator positions tend to enter the field with little to no oncology training.  The cancer registrars are trained to fully understand the disease as well as utilize all critical thinking skills to put the patient’s story together in one abstract.   As previously mentioned, cancer registrars are a valuable asset in medical oncology that is sometimes overlooked, and could be valuable in medical oncology research if given the opportunity.

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