The West Virginia Cancer Registry (WVCR) was established by the West Virginia Department of Health and Human Resources in 1991 as a breast and cervical cancer registry. In 1993, WVCR became an all-site registry, collecting data on all cancers except basal and squamous cell carcinoma of the skin and in situ cervical cancer. In 2002, two years prior to the Federal mandate, WVCR began collecting data on non-malignant brain and other central nervous system tumors. WVCR is funded by both State and Federal funding, with the latter administered through a cooperative agreement with the Centers for Disease Control and Prevention’s National Program of Cancer Registries.
The West Virginia Cancer Registry collects information on all cancers diagnosed and/or treated in the state of West Virginia and, through lawful reciprocal data sharing agreements, all cancers diagnosed and/or treated among West Virginia residents by health care providers outside the state of West Virginia. A resident is a person reporting a West Virginia address at the time of diagnosis.
The West Virginia Cancer Registry’s reference date (the start date after which reportable cancer cases must be included in the registry ) is January 1, 1993 for all cancer sites. The reference date for benign brain and CNS neoplasms is January 1, 2002.
All West Virginia Cancer Registry employees sign a confidentiality pledge that meets the requirements of applicable state laws as well as the requirements of the Health Insurance Portability and Accountability Act (HIPAA). West Virginia code protects the confidentiality of both patient and health care provider. Legal analysis of the applicable state laws concerning the establishment and operation of the West Virginia Cancer Registry found that the West Virginia laws were, with one exception (specification of de-identification methodology), more stringent than HIPAA.
Release of Identified Information
West Virginia code permits release of identified data ONLY under two circumstances:
- Data provided by a facility or reporter may be provided back to that facility or reporter as a failsafe in the event of catastrophic data loss. However, ONLY data provided by the facility or reporter may be provided. Additional information provided by other sources may NOT be disclosed.
- When a lawful reciprocal data sharing agreement exists, WVCR may provide identified data about another state or territory’s residents or tribal entity’s members diagnosed and/or treated in West Virginia back to the state/territory/tribal entity, which, in turn, is to provide WVCR with identified data on West Virginia residents.
The West Virginia Cancer Registry is funded by appropriations made by the State of West Virginia and by the Centers for Disease Control and Prevention’s National Program of Cancer Registries (NPCR). Additional information about the National Program of Cancer Registries is available from the CDC website.
The West Virginia Cancer Registry is subject to certification by the North American Association of Central Cancer Registries (NAACCR). Certification is based on timeliness, completeness and data quality. WVCR was certified at the “silver” level for diagnosis years 1997 and 1998 and at the “gold” (highest) level for diagnosis years 1999, 2000, 2001, 2002, 2003 and 2004 (the most recent year for which certification results were available at the time of this writing). In addition, West Virginia Cancer Registry data meet the 24-month standards of the National Program of Cancer Registries.
Use of West Virginia Cancer Registry Data
The West Virginia Cancer Registry is committed to the use of cancer incidence data as a critical component of cancer control and publishes this annual report on cancer incidence in West Virginia to be used by state, community-based, regional and national cancer control groups. WVCR also provides de-identified summary data (rates and distributions of stage at diagnosis) for use by the American Cancer Society and provides de-identified data to the Centers for Disease Control and Prevention for the publication United States Cancer Statistics (US Cancer Statistics Working Group, 2005) and to the North American Association of Central Cancer Registries for the publication Cancer in North America (North American Association of Central Cancer Registries, 2006). Bona fide researchers may obtain access to de-identified case level data under strict controls including approval by the relevant institutional review board and the WVCR Cancer Advisory Committee. For information on how to apply for de-identified case data, please contact the WVCR director at (304) 558-6421.