Engaging Clinicians in the Collection of Cancer Registry Data to Improve Clinical Research

In June, the Commission on Cancer of the American College of Surgeons published a revision of its Facility Oncology Registry Data Standards (FORDS) manual, which contains all the data items, codes, and rules to abstract data into cancer registries at the more than 1,500 Commission on Cancer–accredited hospitals in the United States. First developed in 2003, the updated manual, FORDS: Revised for 2015,¹ contains revisions in clinical and pathologic TNM staging, clarification for coding biopsies followed by surgery, clarification for reporting dosages for proton treatment, and new sex codes to include transsexual natal male and natal female, among others.

A more comprehensive revision of the manual led by Frederick L. Greene, MD, FACS, Chair of the FORDS Revision Task Force, Medical Director of Cancer Data Registry at the Levine Cancer Institute, Charlotte, North Carolina, and Clinical Professor of Surgery at the University of North Carolina School of Medicine, Chapel Hill, is underway and projected to be completed in 2018.

Changes in the FORDS manual also affect other registry groups, including the North American Association of Central Cancer Registries, the National Cancer Data Base of the Commission on Cancer, the National Cancer Institute’s Surveillance, Epidemiology, and End Results (SEER) Program, and the Centers for Disease Control and Prevention National Program of Cancer Registries.

According to Dr. Greene, the FORDS manual is an important and relevant tool for clinicians and researchers because it determines what information is abstracted into the National Cancer Data Base and other cancer registries and influences the scope and quality of clinical studies.

The ASCO Post talked with Dr. Greene about the importance of the FORDS manual in clinical research and why every clinician/scientist should be aware of its content.

Shared Data Collection

Please talk about the importance of the FORDS manual.

The FORDS manual is important because it contains all the data items on patient care that are collected and coded by hospital registrars, which can then be used as a source for answering research questions. Most clinicians have no idea what hospital registrars do or how this information is compiled.

About a year and a half ago, I was asked to lead a multidisciplinary steering committee of oncology experts, including ASCO members, to revise all of the data codes in the FORDS manual, which is an ongoing process. We hadn’t had a revision in 12 years, and we’ve never had input from clinicians on the pertinent variables of clinical care that provide insight into outcomes of current treatment strategies.

To ensure effective revision of all data codes, clinicians will be invited to participate through membership in expert panels that have been created for the development of the 8th edition of the American Joint Committee on Cancer (AJCC) Cancer Staging Manual, which will be completed in the fall of 2016.

I have contacted individual clinician leaders in the steering committee and have asked them to tell us what new codes are needed for surgery, drugs, and diagnostic studies, because if we don’t have the codes to capture this information in the hospital setting, we won’t be able to put them into the National Cancer Data Base, which is jointly sponsored by the American College of Surgeons and the American Cancer Society.

Research Applications

How are the data contained in the FORDS manual used as a research tool?

The National Cancer Data Base has served as a source of data for many peer-reviewed studies. Approximately 70% of all newly diagnosed cancers from the more than 1,500 Commission on Cancer–accredited hospitals in the United States are captured in this database. The large sample size of data and the range of hospital types make the information contained in the FORDS manual a viable alternative to institutional or clinical trial data as a source of information for answering some research questions.

My goal is to inform physicians about the registry process so they have an understanding of its purpose. Most clinicians have no idea how the data are collected in any of the registries. They use the data in SEER, for example, but they have no idea how the data got there, and they have never been involved in the data-collection process.

Clinician Involvement

How would you like ASCO members to get involved in the FORDS data revision project?

In general, I would just like physicians to be aware of the importance of the FORDS manual and the collection of data for the various registries and to let us know what significant changes in clinical care, such as new surgical procedures and new drugs, we need to collect and include to keep the data current and relevant. They are doing that through the steering committee we established.

The FORDS revision process is an important project to ensure that the surveillance and collection of data relating to the treatment of patients with cancer continue. ■

Disclosure: Dr. Greene reported no potential conflicts of interest.

Reference

1. American College of Surgeons Commission on Cancer: Facility Oncology Registry Data Standards (FORDS): Revised for 2015. Available at https://www.facs.org/quality-programs/cancer/ncdb/registrymanuals/cocmanuals/fordsmanual. Accessed November 3, 2015.