Consultation. Consultation and collaborative research expertise focused on study design, proposal development, IRB applications, and interpretation of population-based local and national SEER data.
Rapid Case Ascertainment. Rapid identification and ascertainment of eligible study participants, requiring review of all pathology reports indicating a cancer diagnosis at metropolitan area hospitals, clinics, pathology laboratories and radiation therapy facilities and rapid collection of patient demographic information. This speeds up case identification for population-based studies, with most cases identified within one to two months of diagnosis.
Recruitment and Survey Support. Oversight and support of study participant recruitment, consenting, and data collection via telephone, mailed and in-person interviews. To automate the collection of self reported data, assistance is also provided for the development and processing of paper, e-mail, and web based surveys.
Collection and Abstraction of Medical Records. Collection of medical records and abstracting of study-specific data which are not available in the NJSCR.
Biospecimen Collection. Collection of biologic specimens, including blood, buccal cells and tumor blocks, from study participants and/or diagnosing hospitals including non-Cancer Institute facilities.
Database Query. Response to requests for population-based data requiring query of the NJSCR and/or the national SEER Limited-Use data files for descriptive analyses.
Database Linkage. Linkage of outside data sources to NJSCR data for the collection of patient demographics, treatment and survival data.
The Epidemiology Services Shared Resource will provide the necessary support to researchers for access to and utilization of cancer registry data and patients for entry into population-based investigations of cancer prevention, etiology, treatment and outcomes. The following is a list of the types of peer-reviewed research that will be supported by the Epidemiology Services Shared Resource:
Descriptive Epidemiologic Studies of Cancer. By accessing the aggregate NJSCR and national SEER population data, the frequency of occurrence or mortality from cancer can be described, stratifying or controlling for effect, modifying or confounding factors, such as date of diagnosis, stage of disease, gender, race/ethnicity, or other group characteristics. Follow-up of patients in the NJSCR will also allow for the description of survival after cancer diagnosis. These descriptive studies will not require patient or physician contact. However, due to coding changes that have been implemented by SEER since its inception, the Epidemiology Services Shared Resource consultation will be critical to ensure proper use and interpretation of these data.
Studies Involving Linkage of NJSCR Data to Other Databases. Routine, SEER-supported, linkage of the NJSCR database for vital status update will be done using multiple data sources, such as the Social Security Administration (SSA). These routine linkages will benefit all investigators who require access to the NJSCR database, providing cancer case vital status follow-up information for research studies.
Population-based Case-Control and Cohort Studies. Population based case-control studies of cancer causation and cohort studies of treatment and prognosis will require direct contact with cases via information obtained from the NJSCR database or from rapid case ascertainment. The Epidemiology Services Shared Resource faculty and staff will work with investigators to select eligible participants from the NJSCR database, including personal identifying information and tumor characteristics. Identifiers will not be released to investigators, with the exception of NJSCR-affiliated faculty and their research staffs who serve as unfunded adjuncts to the Epidemiology Services Shared Resource and who can obtain identifiers, but whose studies are still overseen and regulated by the Epidemiology Services Shared Resource. There are currently six NJSCR-affiliated faculty, all of whom are scientific members of the Cancer Prevention and Control Program. Researchers outside the NJSCR-affiliated faculty group who wish to conduct epidemiologic research involving NJSCR cases are directed by the Epidemiology Services Shared Resource Director to a member of the NJSCR-affiliated faculty who best suits their needs in addressing their research question.
Studies Involving Tumor Tissue Acquisition, Biospecimens and Medical Record Retrieval. These studies will require direct contact with cases for consent to obtain existing tumor tissue samples and medical records, as well as collection of biologic specimens. The Epidemiology Services Shared Resource faculty and staff will work with investigators to select and consent eligible participants from the NJSCR database, contact diagnosing hospitals for retrieval of tumor blocks and medical records, and manage the proper return of tissue blocks. For the collection of biological specimens, Epidemiology Services Shared Resource staff will contact and consent eligible study participants and arrange for the appropriate specimen collection from area facilities. Biospecimens shared with outside investigators will be de-identified and links to personal identifiers will remain with the Epidemiology Services Shared Resource. Accomplishing these studies successfully requires maintaining good working relationships with all New Jersey area facilities. Abstracting expertise will also be available for studies requiring medical record data not available in the SEER registry.