SPECIAL STUDIES

Comprehensive and innovative use of central cancer registry data for cancer control and research has always been a high priority for the LTR. Because 92% of Louisiana cases are identified through electronic pathology reporting, patients who might qualify for a research endeavor can be identified shortly after diagnosis. The registry has actively participated in research studies in collaboration with investigators from the Louisiana State University Health Sciences Centers, the National Cancer Institute (NCI), the Centers for Disease Control and Prevention (CDC), other cancer registries, and universities.

The majority of the LTR studies are population based so that results can be generalized to the population as a whole. The LTR often enhances its routine data with additional information through linkages and special studies. These include linkages with census data to obtain area-based socioeconomic indicators and with Medicare, Medicaid and hospital discharge data to obtain additional information on comorbidities, adjuvant treatment, height, weight, and insurance. Other supplementary information is obtained through additional medical abstraction from hospitals and physician offices as well as patient surveys and interviews.

The following are the studies in which the LTR participates that involve additional data collection. All received IRB approval.

Comparative Effectiveness Research (CER)

In response to the need for data to support comparative effectiveness research (CER), or patient-centered outcomes research, the Agency for Healthcare Research and Quality (AHRQ) and CDC’s National Program of Cancer Registries (NPCR) developed this special data collection enhancement project to help answer specific CER questions through the development of analytic datasets. read more

Comparative Effectiveness Analysis of Surgery and Radiation (CEASAR) Study

The Comparative Effectiveness Analysis of Surgery and Radiation (CEASAR) Study is a 3-year study funded by the Agency for Healthcare Research and Quality (AHRQ), through a grant to the Vanderbilt University Medical Center, and is subcontracted to the Louisiana Tumor Registry at LSUHSC. read more

Measuring Your Health (MY-Health) Study

The MY-Health study is funded by the National Institutes of Health (NIH) and is occurring at 4 research centers around the country, including Louisiana. The coordinating center is the Georgetown University, Lombardi Comprehensive Cancer Center, Cancer Control Program. read more

SEER Patterns of Care (PoC)

The SEER PoC studies are conducted to satisfy the Congressional Directive under Public Law 100-607 to the NCI to “assess the incorporation of state-of-the-art cancer treatment into clinical practice and the extent to which cancer patients receive such treatment.” read more

Early Case Capture (ECC) of Pediatric and Young Adult Cancers

In 2008, the US Congress signed into law the Caroline Pryce Walker Conquer Childhood Cancer Act. The ECC program was created to increase the availability of timely pediatric cancer data for surveillance, clinical, and research communities. read more

African American Cancer Epidemiology Study (AACES)

The AACES, funded by the National Cancer Institute through a grant to the Duke Cancer Institute, seeks to better understand the causes of ovarian cancer in African American women. Ovarian Cancer is the 5th most common cause of death from cancer in women. This is the first study to focus on ovarian cancer in African Americans. The importance of this study is evident in the fact that the survival of African Americans diagnosed with ovarian cancer is worse than white women diagnosed with ovarian cancer. read more

CIN III

With the introduction of the HPV vaccine, baseline information on precancerous cervical lesions is required in order to assess the impact of the vaccine on disease burden. A multi-state surveillance project in four cancer registries (Kentucky, Louisiana, Michigan and Los Angeles Cancer Surveillance Program) was developed to estimate the incidence rates of precancerous cervical lesions and to evaluate the feasibility of routine surveillance of precancerous cervical lesions using the existing cancer registry infrastructure. read more

Young Breast Cancer Survivors (YBCS)

The Young Breast Cancer Survivors study is funded by the Centers for Disease Control and Prevention (CDC) and will include about 100 residents of New Orleans and Baton Rouge that were under the age of 45 at the time of breast cancer diagnosis. Other eligible participants include family members (n = 50) and service providers (n=25) of women younger than 45 at the time of breast cancer diagnosis. read more

Osteosarcoma Surveillance Study

This study, conducted by RTI International (RTI), on behalf of Eli Lilly and Company, is investigating the safety of the drug Forteo. The purpose of the study is to learn more about factors that may be related to the development of osteosarcoma or similar cancers. read more

The LTR previously participated in these studies:

North Carolina-Louisiana Prostate Cancer Project (PCaP)

Prostate cancer patients from North Carolina and Louisiana were enrolled in the PCaP study, which was funded by the Department of Defense, with the intention to develop effective therapies for advanced prostate cancer or distinguish between indolent and aggressive disease. read more

Quality of Life in Prostate Cancer Project (QPCAP)

The PCaP study led to a follow-up study: Quality of Life in Prostate Cancer Project (QPCaP) study. This study sought to identify pre-diagnostic variables that may affect the long-term health-related quality of life (HRQOL) of men diagnosed with prostate cancer. read more

AYA Health Outcome and Patient Experience (HOPE) Study

Compared to younger and older cancer patients, adolescent and young adult cancers (ages 15 to 39 years old) have seen little or no improvement in cancer survival for decades. Thus, research is required to identify factors that contribute to the poorer survival in AYAs. In 2007, the National Cancer Institute (NCI) funded seven population-based registries including the Louisiana Tumor Registry to conduct this study. The purpose was to test the feasibility of conducting a study in AYAs to examine patient experience in care, the quality of care received, and health outcomes in the first 14 months following cancer diagnosis. read more

CDC Breast and Prostate Cancer Data Quality and Patters of Care (PoC-BC) Study

The PoC-BP study involved researchers from the CDC and seven states and is the National Program of Cancer Registries’ most comprehensive PoC study. The study objectives included examining patterns of initial (first course) treatment received by prostate cancer and female breast cancer patients, the extent to which that care is concordant with nationally recognized treatment guidelines, and how patterns of cancer care vary by patient, provider, and health system. read more