American College Of Surgeons - Inspiring Quality: Highest Standards, Better Outcomes

Major Change in Registry Follow-up - Dx years prior to 2004 no longer required

The Commission on Cancer (CoC) and National Cancer Database (NCDB) have received a number of questions regarding our original email sent March 19, 2021. We are sending this updated communication to clarify the following: Programs will only need to perform follow-up for diagnosis year 2004 or the cancer registry reference date to present, whichever is shorter.

Major Change in Registry Follow-up - Dx years prior to 2004 no longer required

This is an important change to standard 6.5.

Please read this carefully as this change will affect your registry work effective immediately.

What is the change?

You will no longer be required to collect follow-up information for cases diagnosed before 2004.

When is the change effective?

March 19, 2021

Why the change?

Thanks to cancer registries and registrars in CoC-accredited cancer programs, the NCDB has become a rich source of information for monitoring outcomes, improving cancer care, and assessing longitudinal outcomes. We fully appreciate the effort required to support data submission and proactively review the database on a regular basis to look for ways to streamline data collection, including follow-up, and maintain the information essential to monitoring and assessing the quality of cancer care being delivered by our accredited programs.

Recently we identified that the introduction of site-specific variables in 2004 made accurate longitudinal comparisons with prior diagnosis years more difficult. Given the lower utility of this data and recognizing the challenges of following up patients diagnosed before the introduction of site-specific variables, we are electing to archive data prior to 2004 and will no longer require information be added to the registry for this time period.

For now, this has resulted in a change to CoC Standard 6.5 – Follow-up of Patients. We will continue to study whether other adjustments in long-term follow-up can be made without compromising the integrity of existing reports and studies. Stay tuned for more details.

How will CoC Standard 6.5 change

CoC Standard 6.5 Follow-Up of Patients—Definition and Requirements

Long-term follow up is essential to evaluate outcomes of cancer care. Accurate follow-up data enables the program to compare outcomes with regional, state, or national statistics. Follow up information is obtained at least annually for all analytical cases of living patients included in the cancer registry database.

For all eligible cases, an 80 percent follow up rate is maintained from 2004 or the cancer registry reference date, whichever is shorter. A 90 percent follow up rate is maintained for all eligible analytic cases diagnosed within the last five years or from the cancer registry reference date, whichever is shorter.

All reportable cases are followed, except the following:

  • Residents of foreign countries
  • Cases reportable by agreement
  • Patients whose age exceeds 100 years and who are without contact for more than 12 months.
  • Analytic cases Class of Case 00

The change to this standard will be incorporated into the Optimal Resources for Cancer Care (2020 Standards) manual in the coming weeks. We will notify programs when an updated version of the standards manual is available.

What this means for hospital-based cancer registries

Programs will only need to perform follow-up for diagnosis year 2004 or the cancer registry reference date to present, whichever is shorter. Programs will be evaluated on this standard change beginning with site visits in 2022.

How does this impact the program’s reference date?

A program’s reference date will remain as currently established within CoC and the program. CoC and NCDB will no longer be using reference dates for reporting and standard rating purposes. Going forward the CoC and NCDB will be using 2004 and the date of program accreditation, when it is more recent than 2004, for purposes of reporting and standard rating purposes. We do not expect any unintended consequences, but we will monitor the situation closely.

Can a program still request a change in its reference date?

  • If a program has already requested a reference date change before March 19, 2021 the request will be honored.
  • From March 19, 2021 forward, requests for reference date changes will be on pause to allow the CoC enough time to evaluate whether all programs can reduce the length of follow-up from lifetime, as it is presently, to a much shorter interval.

What about cancer registry software vendors

We have communicated this change to cancer registry software vendors so they can make the required changes to their software to support accurate reporting.

The CoC and NCDB would like to thank our hospital cancer registrars for their perseverance and excellence in collecting and reporting high quality data during these difficult times. Without the continued level of dedication demonstrated by hospital cancer registrars, we would not be able to provide these valuable resources to our CoC-accredited cancer programs and the cancer community to continually monitor and improve cancer care. Please contact the NCDB if you have any questions or concerns at ncdb@facs.org.