Cancer Data Registry

  • Cancer Data Registry
  • UHC Campus
  • Old Hall, Level 2, Suite 2134
  • 1 South Prospect Street
    Burlington, VT 05401
  • Phone: 802-847-3551
  • Fax: 802 847-0436
  • Monday-Friday, 7 AM-4 PM
  • Directions

1092Close-up-of-microscope.jpg
Fletcher Allen's Cancer Data Registry tracks information about cancer cases treated here at our medical center, and also contributes to the sharing of information about cancer on a national level. 

Cancer Data Registry at Fletcher Allen

This program is an American College of Surgeons Commission on Cancer-approved program, and is staffed by certified registrars.

Among the vital functions this group fulfills:

  • Enter approximately 1,500 new cancer cases into our data base each year
  • Transmits data to the Vermont Cancer Registry monthly, and to the National Cancer Data Base annually
  • Serves as a resource for accurate, complete, and readily available data for retrospective research studies

Frequently Asked Questions

What is a Cancer Registry

What is an Approved Cancer Program

Why Maintain a Cancer Registry

What Information is Maintained in the Cancer Registry

How is this Data Used

Is the Information Kept Confidential

How Can You as a Cancer Survivor help the Cancer Registry

 

What is a Cancer Registry

A cancer registry is an information system designed for the collection, management, and analysis of data on people who have been diagnosed with malignant or neoplastic disease (cancer). Cancer registries can be classified into three general types:

Health care institutions registries: maintain data on all patients diagnosed and/or treated for cancer at their facility. Health care facilities report cancer cases to the central or state cancer registry as required by law. The Fletcher Allen Cancer Data Registry is an example of this type of registry.

Central registries: are population-based registries that maintain data on all cancer patients within certain geographical areas. The Vermont Cancer Registry is this type of registry.

Special purpose registries: maintain data on a particular type of cancer, such as brain tumors. 

What is an Approved Cancer Program?

Fletcher Allen maintains its status as an American College of Surgeons Commission on Cancer Approved Cancer Program which ensures patients and providers the following benefits: 

Patient benefits:

  • Quality of care close to home provided by one network system
  • Coordinated service locations and practitioners within one system
  • Comprehensive care offering a more complete range of state-of-the-art services and equipment with one system
  • Multidisciplinary team/facility approach to coordinate the best treatment options available
  • Access to cancer-related education and support within one system
  • Information about ongoing cancer clinical trials and new treatment options communicated throughout the network

Provider benefits:

  • A model for organizing and managing your network to ensure multidisciplinary, integrated, and comprehensive oncology services throughout the system
  • Sharing of cancer-related information on patients seen within the network for all those involved in providing cancer care
  • Recognition by other national health care organizations, including the Joint Commission, as having established performance measures for high-quality cancer care across the network continuum
  • Monitoring of cancer patient outcomes using the network data collected by the cancer registry from all facilities involved
  • Information about ongoing cancer clinical trials and new treatment options communicated throughout the network
  • Free marketing and national public exposure by partnering with the CoC and American Cancer Society (ACS) in the Facility Information Profile System (FIPS) -- an information sharing effort of resources and services and cancer experience for the ACS National Call Center and Web site. One record will exist that will encompass all network resources for public viewing.
  • Participation in the National Cancer Data Base (NCDB) -- a nationwide oncology outcomes database. Pooled data from all facilities will be displayed as one network program
  • Access to Benchmark Reports containing national aggregate data and network-specific data to assess patterns of care and outcomes relative to national norms and to monitor and improve care across the continuum
  • Participation in Special Studies for the ad hoc collection of specific data to address important cancer problems
  • Marketing tools provided to communicate CoC-approval and its benefits to the community

As part of their approval, Fletcher Allen publishes their cancer statistics yearly through an Annual Report.

Why Maintain a Cancer Registry?

The National Cancer Act of 1971 mandated cancer care facilities to collect, analyze, and disseminate data for use in the prevention and treatment of cancer. Then in October 1992, Congress enacted Public Law 102-515 establishing a National Program of Cancer Registries for the following purposes:

  • Local, state, and national cancer agencies use registry data in defined areas to make important public health decisions.
  • Cancer registries are valuable research tools for those interested in the etiology, diagnosis, and treatment of cancer.
  • Fundamental research on the epidemiology of cancer is initiated using the accumulated data.
  • Lifetime follow-up is an important aspect of the cancer registry. Current patient follow-up serves as a reminder to physicians and patients to schedule regular clinical examinations and provides accurate survival information.

What Information is Maintained in the Cancer Registry?

Demographic Information: Age, gender, race/ethnicity, birthplace, and geographic location

Medical History: Physical findings, screening information, occupation, and any history of previous cancer.

Diagnostic Findings: Types, dates and results of procedures used to diagnose cancer.

Cancer Information: Primary site, cell type and extent of disease.

Cancer Therapy: Surgery, radiation therapy, chemotherapy, hormone or immunotherapy.

Follow-up: Annual information concerning treatment, recurrence, and patient status is updated to maintain accurate surveillance information.

How is this Data Used?

  • Evaluate patients, outcomes, quality of life, and satisfaction issues and implement procedures for improvement
  • Provide follow-up information for cancer surveillance
  • Calculate survival rates by various data items
  • Provide information for cancer program activities
  • Analyze referral patterns
  • Allocate resources at the health care facility, the community, region or state level
  • Develop educational programs
  • Report cancer incidence as required under state law
  • Evaluate efficacy of treatment modalities

Is the Information Kept Confidential?

Confidentiality of patient identifying information and related medical data is strictly maintained in accordance with the Health Insurance Portability and Accountability Act (HIPAA). Aggregate data are analyzed and published without patient identifiers.

Did you know that the Fletcher Allen Cancer Data Registry:

  • Has approval from the American College of Surgeons Commission on Cancer
  • Is an approved program that adheres to guidelines established by the American Joint Commission of Cancer
  • Enters approximately 1,900 new cancer cases into the data base per year
  • Currently follows approximately 35,000 cases
  • Actively participates in multidisciplinary and specialty tumor boards
  • Has staff members serving on the Fletcher Allen Cancer Committee
  • Has a certified staff who are members of regional and national registrar associations
  • Transmits data to the Vermont Cancer Registry monthly
  • Transmits data to the National Cancer Data Base annually
  • Produces an annual report containing informational articles and statistical data
  • Serves as a resource for accurate, complete, and readily available data for retrospective research studies

How Can You as a Cancer Survivor Help the Registry?

  • Continue annual life-long follow-up with your health care provider so information can be obtained on:
    • residual disease or its spread
    • recurrences or additional malignancies
    • subsequent treatment
  • Encourage other cancer survivors to also obtain follow-up
  • Provide, if requested by the registry information, current home address and/or health care provider

For further information regarding the Cancer Data Registry, contact the registry at:

Fletcher Allen
UHC Campus, HIM Administration
Old Hall Building, Level 2, Room 2114
1 South Prospect Street, Burlington 05401
802-847-3551