Skip to main content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

HHS Logo Eagle IconU.S. Department of Health and Human Services

Expanding Data Collection for the National Program of Cancer Registries (NPCR) for Comparative Effectiveness Research (CER)

Enhancing state cancer registries to collect specialized data and expanding electronic health record reporting to central cancer registries.
Agency
  • Centers for Disease Control and Prevention (CDC)
Start Date
  • 4/8/2013
Functionality
  • Standardized Collection of Standardized Clinical Data
  • Use of Clinical Data for Research

 

STATUS: Completed Project

BACKGROUND

Enhanced data collection and data linkages between central cancer registries and other health related datasets can provide researchers with essential real-world and population-based data for comparative effectiveness research (CER). This project built upon previous funding provided to central cancer registries operated by 10 states—part of the National Program of Cancer Registries (NPCR)—to collect detailed treatment and outcomes data from electronic data sources. The PCORTF funding extended longitudinal data collection for a subset of cancer patients in these 10 states, enabling patient-level CER of cancer outcomes, and to improve the tools and timeliness of cancer reporting to the CDC.

PROJECT PURPOSE & GOALS

The NPCR Registries collect detailed treatment and outcomes data for breast, colon, and rectum cancer cases, including expanded patient information such as body mass index, occupation, co-morbidities, and smoking history, which are important for CER. With PCORTF funding, the project was able to extend longitudinal follow-up of these cancer patients, collecting additional data and outcomes for research.

Project Objectives:

  • Expand specialized cancer registries by extending and continuing longitudinal follow-up.

  • Enhance specialized cancer registries to allow active follow-up of cancer patients to identify progression and recurrence of breast, colon, and rectal cancer.

  • Create tools that facilitate expanded Electronic Health Record reporting to central cancer registries for CER.

PROJECT ACHIEVEMENTS & HIGHLIGHTS

  • With PCORTF funding, the CDC extended and continued longitudinal follow-up of breast, colon, and rectum cancer patients, collecting and assessing information related to vital status, disease recurrence, disease progression, and additional type of treatment. The data was collected over one year with an average follow-up period of over 3 years.

  • Treatment data was successfully submitted each year to the CDC and made available to researchers through the CDC’s National Center for Health Statistics (NCHS) Research Data Center. This data included important information for CER, such as actual chemotherapy doses received and reasons for treatment cessation or alteration for each case.

PUBLICATIONS, PRESENTATIONS, AND OTHER PUBLICALLY AVAILABLE RESOURCES

The project generated more than 30 papers, presentations, and poster sessions. A selection is available below:

Publications:

  • In fall 2014, the project team published a journal article in Journal of Registry Management titled, “Enhancing Cancer Registry Data for Comparative Effectiveness Research (CER) Project: Overview and Methodology. The article can be found here: https://pubmed.ncbi.nlm.nih.gov/25419602/

  • The project team published a journal article in February 2017 in the Journal of Cancer Research and Therapy titled, “KRAS Testing and First-line Treatment Among Patients Diagnosed with Metastatic Colorectal Cancer Using Population Data from Ten National Program of Cancer Registries in the United States.” The article can be found here: https://nobleresearch.org/Doi/10.14312/2052-4994.2017-2

  • In October 2014, the project team published a journal article in the Journal of Clinical and Gastroenterology titled, “Colorectal Cancer Incidence Rates in the Louisiana Acadian Parishes Demonstrated to be Among the Highest in the United States.” The article can be found here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4218930/

  • The project team published a journal article in May 2016 in Cancer Medicine titled, “The Effect of Comorbidity on the Use of Adjuvant Chemotherapy and Type of Regimen for Curatively Resected Stage III Colon Cancer Patients.” The article can be found here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4864816/ 

  • In January 2015, the project team published a journal article in Multicenter Study titled, “Population-Based Lynch Syndrome Screening by Microsatellite Instability in Patients ≤50: Prevalence, Testing Determinants, and Result Availability Prior to Colon Surgery.” The article can be found here: https://pubmed.ncbi.nlm.nih.gov/25601013/ 

RELATED PROJECTS

Below is a list of ASPE-funded PCORTF projects that are related to this project

Strengthening and Expanding the Community Health Applied Research Network (CHARN) Registry to Conduct Patient-Centered Outcomes Research (PCOR) – CHARN is a network of the Health Resources and Services Administration’s (HRSA) community health centers (CHCs) and universities that was established in 2010 to create an infrastructure for this safety-net community to carry out patient-centered outcomes research (PCOR), including observational and interventional studies among underserved populations, ultimately leading to improved patient care and outcomes. To realize the full potential of the CHARN infrastructure for information sharing and research, CHARN wanted to expand and enhance its data registries and to make its data available to non-CHARN researchers conducting PCOR.

Improving the Mortality Data Infrastructure for Patient-Centered Outcomes – Comprised of all U.S. mortality events since 1979, the National Death Index (NDI) database allows researchers to match entries in the NDI to those participating in longitudinal clinical and epidemiologic studies to determine both fact and cause of death. A significant challenge with the NDI has been the lag between the date of death and the availability of the record for matching purposes. The CDC’s National Center for Health Statistics (NCHS) worked to improve the infrastructure to support more timely and complete mortality data collection through more timely delivery of state death records (e.g., cause of death) to the National Death Index (NDI) database and through linking NDI records with nationally collected hospital datasets to obtain a more complete picture of patient care.