Building a Melanoma Research Registry Within a Cancer Reporting Software

Introduction

As a hospital-based cancer registry, numerous requests for utilization of Northside Hospital Cancer Institute (NHCI)'s data, specifically for retrospective research, are received annually. We found that existing data fields in the registry software did not meet the needs of the melanoma program and the creation of additional fields within the software was explored (Figure 1). In June 2020, the NHCI cancer registry, in a joint effort with our principal investigator, embarked on creating a melanoma research registry within the current cancer registry software (Figure 2).

Figure 1.

What, When, Where, and Why of the Creation of New Data Fields for Melanoma Research Registry Cases

Figure 2.

Process Cycle

Purpose

• Provide valuable research information not currently captured in cancer reporting software

• Demonstrate the utilization of current cancer registry software as the foundation software for building out a new database

• Identify key benefits and lessons learned while building out a research database within cancer reporting software

Method

• The existing cancer registry software platform was determined to be sufficient as the foundation for a melanoma research registry.

• A total of 204 user-defined fields were collaboratively defined by the researcher and cancer registry staff.

• Build-outs of all 204 new user-defined fields were created by Certified Tumor Registrar (CTR) (Figure 3).

• Two CTRs performed abstraction, data collection, and quality-review functions.

Figure 3.

Build-Out of 204 New Data Fields by Category

Example Reports

The reports in Figures 4 and 5 are examples to show analysis of melanoma patients combining data items from the cancer registry fields and the newly developed melanoma fields.

Figure 4.

Example Report 1: Figure Showing the Combination of Clinical Stage III From Traditional Cancer Registry Field Combined with Newly Created BRAF Fields for Melanoma Registry

Figure 5.

Example Report 2: Infographic Showing Enhanced Data Points Derived From Combination of Traditional Cancer Registry Fields and Newly Created Melanoma Fields

Benefits

For Investigator

• Created research registry with both cancer registry fields and newly created disease-specific data fields available for further analysis

• Enabled opportunity to compare data with national database

• Incorporated casefinding activity already done by cancer registry to identify cases for melanoma registry

• Utilized survivorship tracking already in place by cancer registry for lifelong tracking of patients in melanoma registry

• Produced ample quality and comprehensive data available to participate in additional studies and publications

For Cancer Registry

• Increased value of registry due to growing demand for registry data

• Increased efficiency as registry staff are already familiar with all aspects of abstracting data and creating reports within the cancer reporting software

• Improved data quality with review of 100% of cases in research registry by investigator and registry staff

• Decreased cost with no additional software to purchase

• Decreased reliance on information technology as CTRs can develop fields in cancer registry software independently

• Created blueprint within cancer registry software for establishing other research registries within cancer registry software

Lessons Learned

Implementation of a successful research registry within the current cancer registry software can be accomplished with clear communication, flexible expectations, thorough documentation, and goal-setting target dates (Figure 6).

Figure 6.

Summary of Lessons Learned

Conclusion

Building a research registry within a cancer registry software empowers CTRs to create an enhanced database that is mutually beneficial to researchers and the cancer registry. CTRs have the opportunity to contribute to deeper analysis of cancer patients with the ultimate goal of improving patient care.