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).

Health care institution 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 Alta Bates Summit Medical Center’s Data Registry is an example of this type of registry.

What is an Approved Cancer Program?

Alta Bates Summit Medical Center 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
• community

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 Alta Bates Summit Medical Center’s 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 2,000 new cancer cases into the data base per year
• Currently follows approximately 18,400 cases
• Actively participates in multidisciplinary and specialty tumor boards
• Has staff members serving on the Alta Bates Summit Medical Center Cancer Committee
• Has a certified staff who are members of regional and national registrar
  associations
• Transmits data to the California 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 staff, health status information, current home address, and/or health care provider

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

Alta Bates Summit Medical Center
Cancer Data Registry
Herrick Campus
2001 Dwight Way
Berkeley, CA 94704
(510) 204-3097