SPECIAL STUDIES

Comprehensive and innovative use of central cancer registry data and infrastructure for cancer control and research has always been a high priority for the LTR.  The registry has actively participated in research studies in collaboration with investigators from the Louisiana State University Health Sciences Centers, the NCI, the CDC, other cancer registries, and universities.

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

• Effect of COVID-19 on Cancer Patients and Cancer Health Disparities in Louisiana
  • The goal is to develop the Louisiana Cancer-COVID-19 Registry by linking the Louisiana Tumor Registry (LTR) data with the Louisiana Department of Health (LDH) COVID-19 registry.
  • The linkage enables the study of the impact of COVID-19 infection on cancer health disparities using the new Louisiana Cancer-COVID-19 Registry, which allows us to effectively respond to national clinical and epidemiological studies through the coordinated data collection established by the new Louisiana Cancer-COVID-19 Registry.
• Research on Prostate Cancer in Men of African Ancestry: Defining the Roles of Genetics, Tumor Markers and Social Stress (RESPOND)
  • The RESPOND Study is a multi-site study funded by the NCI which seeks to identify the reasons behind the disproportionally higher risk of prostate cancer and death from the disease in African American (AA) men. The overall goal of the study is to establish a prospective cohort of AA men with prostate cancer to uncover etiologic and prognostic genetic and non-genetic risk factors related to disease aggressiveness that underline prostate cancer health disparities in incidence and mortality for AA men. The LTR is currently recruiting patients to complete a survey questionnaire, provide saliva samples, and if interested, provide written consent to collect tumor tissue. This study expects to enroll over 1,000 men.
• SEER Patterns of Care (PoC) Studies
  • The SEER PoC studies are conducted every year to comply with the Congressional Directive to the NCI under Public Law 100-607 to “assess the incorporation of state-of-the-art cancer treatment into clinical practice and the extent to which cancer patients receive such treatment.”
• SEER-Linked Virtual Tissue Repository (VTR)
  • The objectives of the VTR project are to assess the ability of the SEER registries, including the LTR, to serve as a resource for biospecimen research, locate cases with biospecimens in pathology laboratories and determine the requirements to retrieve those biospecimens, provide custom annotation of specified data items, and to capture information on costs for identifying each available biospecimen and performing custom annotation on each biospecimen.
• 10-Year Comparative Effectiveness and Harms of Treatment for Prostate Cancer: CEASAR Study Participants
  • The purpose of this study is to (1) Assess clinical outcomes in men undergoing radiation therapy, surgery and active surveillance for localized prostate cancer approximately 10 years after diagnosis; (2) Compare 10-year patient-reported outcomes among men undergoing radiation therapy, surgery and active surveillance for localized prostate cancer; (3) Explore the extent to which patient characteristics modify comparative effectiveness and harms.
• SEER-Linked Pediatric Cancer Whole Slide Imaging (WSI)
  • The overall goal of this pilot project is seeking to establish the feasibility of, logistical and technical pipelines for, and best practices for obtaining whole slide images (WSI) of microscopic slides generated as part of cancer diagnosis and surgical treatment.
• Understanding and Addressing Cancer Health Disparities in Louisiana
  • The goal of this project is to establish research that brings together the best investigators and institutions in Louisiana conducting research on the genetics/genomics, immunology, and clinical and public health aspects of cancer with a special emphasis on health disparities. Under the leadership of the LSU Stanley S. Scott Cancer Center in New Orleans (LSU-CC-NO) and in partnership with investigators from academic and medical institutions in the state, research will be conducted under the new Gulf South Center for Research and Solutions in Cancer Health Disparities (Gulf South-CARES-CHD).
    • LTR is collecting tumor tissue blocks for genomic and immunologic research on triple-negative breast cancer.
    • LTR is collecting tumor tissue blocks to identify Lynch syndrome in high-risk colorectal cancer patients in Louisiana.
• Comprehensive molecular characterization of endometrial cancer, etiologicheterogeneity, and racial disparities
  • This project aims to study genomic variation across the full spectrum of primary endometrial tumors, distinct risk factor profiles across tumor types, and the role of underlying tumor biology in driving the 2-fold survival disparity. LTR is collecting tumor tissue blocks and tumor registry data for this research.
• Gulf South Minority/Underserved Clinical Trials Network (Gulf South M/U CTN)
  • The purpose of this network is to advance the diagnosis, prevention, and management of cancer by integrated patient care and innovative health care delivery system and to build infrastructures in support of clinical trials and cancer care delivery research.
• Multilevel Mediation Analysis to Explore Racial Disparities in Breast Cancer and Survival using CDC Special Studies
  • The purpose of this project is to develop a multilevel mediation analysis which will be utilized on data from CDC special studies to explore racial disparities in breast cancer recurrence and survival.
• Exercise and Colon Cancer Treatment (EXACT) Trial
  • The EXACT Trial is funded by the National Cancer Institute and is taking place at Pennington Biomedical Research Center (PBRC). The purpose of the study is to learn about the benefits of physical activity in people who have finished their medical treatments for colon cancer. The LTR is assisting with recruitment by identifying eligible patients within the registry database and contacting those patients in order to find patients who are interested in participating in the study.
• African-American Cancer Epidemiology Study (AACES)
  • AACES is an NCI-funded study between research institutions across the United States, one of which is the LTR, which seeks to better understand the diagnosis of ovarian cancer and related cancers in African-American women. The LTR is assisting with recruitment by identifying eligible patients within the registry database and contacting those patients in order to find patients who are interested in participating in the study.
• Disparities and Cancer Epidemiology – Colorectal Cancer (DANCE-CRCA)
  • DANCE-CRCA is an NCI-funded study. The overall goal of this project is to address the biologic basis of the demonstrated relationship between neighborhood deprivation and aggressive colorectal cancer in African Americans. The objectives include evaluating racial differences in the distribution of clinically relevant molecular subtypes of CRC among invasive CRC cases in metropolitan Detroit and Louisiana, evaluating racial differences in the presence of inflammatory phenotypes and the dysregulation of inflammation pathways in CRC tumors, as well as quantifying associations between area-level measures of neighborhood socioeconomic deprivation and CRC molecular subtypes. The LTR is assisting with recruitment by identifying eligible patients within the registry database and collecting tumor tissue blocks for genomic sequencing for patients who sign the consent form.
• Cancer Treatment Disparities in the HIV Population: Exploring the Impact of HIV on Physician and Patient Decision-Making
  • This is an NCI-funded study. The major goal of this project is to understand the oncologist treatment decision-making process for this specific patient population, as well as to develop decision support tools to improve delivery of cancer treatment for people living with HIV. The LTR is assisting with recruitment by identifying eligible physicians who provided care to HIV-infected cancer patients from the registry database and mailing survey packets to eligible physicians.
• Downstream effects of HPV integration on survival/metastasis in oropharyngeal cancer
  • This is a supplement award to a parent R01. The goal of this supplement is to discover the predominant tumor subtypes and characteristics of African American (AA) oropharyngeal cancer, and to define the relationship between HPV integration and survival among AAs with oropharyngeal cancer. The LTR is assisting with identifying eligible patients and collecting tumor tissue blocks for genomic sequencing.
• Racial Disparity in Treatment and Monitoring among Louisiana Work-Age Survivors with Breast Cancer
  • This study aims to investigate treatment and monitoring patterns and assess racial disparities among work-age women with breast cancer in Louisiana (LA). LTR’s responsibilities include providing hash tokens for eligible cases identified from LTR system to REACHnet to perform data linkage and providing linked dataset with required data items to Tulane for data analyses.
• Natural Language Processing Platform for Cancer Surveillance
  • This is an NIH/NCI-funded UH3/UG3 project. This study objectives are to develop methods to assist cancer data abstraction as well as to demonstrate the scalability of DeepPhe*CR through the integration in the SEER’s Data Management System (SEER*DMS). LTR’s responsibilities include providing source records to the lead site (Boston Children Hospital), pilot testing the system, and manually reviewing and coding data for comparison.

The LTR also participates in the following linkage studies:

• Linkage Study for the Forteo Post-Approved Osteosarcoma Surveillance
  • The purpose of this study is to link the LTR data with the Forteo Patient Registry data for an estimation of the incidence of osteosarcoma in patients who received Forteo treatment.
• American Cancer Society Cancer Prevention Study II
  • This study examines the impact of environmental and lifestyle factors on cancer etiology in a large group of American men and women.
• American Cancer Society Cancer Prevention Study III
  • This linkage will allow researchers to identify incident cancers within the cohort and obtain diagnostic and prognostic information necessary to conduct epidemiologic analyses related to cancer.
• NCI-American Association of Retired People (AARP) Diet and Health Study
  • This prospective study aims to elucidate the impact of diet and lifestyle factors on the likelihood of developing or dying from cancer.
• Black Women’s Health Study
  • The goal of this study is to identify and evaluate causes and preventions of cancers and other serious illnesses among African-American women.
• Southern Community Cohort Study
  • This NCI-funded study addresses many questions about the root causes of disparities in the incidence of chronic diseases, including cancer, to help prevent and reduce the burden of cancer among all populations.
• SEER Medicare Linkage Project
  • This linkage of NCI-SEER data with data from the Centers for Medicare and Medicaid Services creates a unique population-based information source for studies on patterns of care for cancer patients aged 65 years and older.
• Cancer Incidence Study of Shell Manufacturing Employees in Louisiana
  • The purpose of this study is to determine the cancer incidence of employees at two Shell facilities by comparing their cancer risk with that of the South Louisiana general population.
• Gulf Long-Term Follow-Up Study (GuLF STUDY)
  • This linkage of LTR data with data collected in the GuLF STUDY will examine the relationship between oil spill-related exposures and cancer outcomes.
• NAACCR Virtual Pooled Registry (VPR)
  • The purpose of VPR is to assist researchers who want to link cohorts with multiple cancer registries. Patient data is not aggregated and remains behind each registry’s firewall for the initial linkage.  A single cohort file is securely exchanged and simultaneously linked with multiple cancer registries using a standardized protocol and linkage software. Individual VPR studies include:
    • Childhood Cancer Survivor Study (CCSS) Linkage, VPR Phase 2
    • Transplant Cancer Match Study

The LTR previously participated in these funded studies:

• Cervical intraepithelial neoplasia (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 the disease burden.  The baseline estimate of the incidence of these lesions, based on this investigation, will be vital in subsequent studies of the efficacy of population-based HPV vaccination efforts to reduce the incidence of cervical cancer and precancerous lesions.
• Young Breast Cancer Survivors
  • The Young Breast Cancer Survivors Study is funded by the CDC and will include about 100 residents of New Orleans and Baton Rouge who were under the age of 45 at the time of their breast cancer diagnosis, as well as 50 family members and 25 service providers for the young cases. For more information about the program and resources available to young breast cancer survivors, please visit survivedat.org.
• SEER Rapid Response Surveillance Studies (RRSS)
  • These are short-term studies evaluating a wide range of topics, including surveillance methods, treatment outcomes, screening practices, health behaviors, and potential improvements in registry operations. These studies may serve as the basis for larger research initiatives funded by other organizations.  We apply and participate in SEER RRSS every year.
• Generating Critical Patient-Centered Information for Decision Making in Localized Prostate Cancer
  • This study is a five-year project funded by the Patient-Centered Outcome Research Institute (PCORI) and AHRQ to follow up with patients enrolled into the CEASAR study longitudinally and collect patient-reported outcome data through 3-year and 5-year patient surveys.
• 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. Through it, the ECC project was initiated to increase the availability of timely pediatric cancer data for the surveillance, clinical, and research communities with the goal of developing a repository of childhood cancer that is representative of the US population.
• Case Investigation of Cervical Cancer (CICC)
  • The purpose of this CDC-funded study is to understand why women continue to get cervical cancer despite the availability of prevention and early detection. Survey and medical chart abstraction data from women diagnosed with invasive cervical cancer will be collected to identify potential missed opportunities for proven public health interventions and determine the barriers and facilitators to screening.
• HPV Typing Project
  • In 2007, the LTR in conjunction with the CDC’s Division of Cancer Prevention and Control participated in a project to estimate the type distribution of human papillomavirus (HPV) in six cancer sites: cervical, anal, vulvar, vaginal, penile, and oral. In 2017, a repeat of this initiative was conducted to assess whether the HPV vaccine effected the HPV type distribution in these select cancers.
• Comparative Effectiveness Analysis of Surgery and Radiation (CEASAR)
  • The CEASAR Study is a three-year project funded by the Agency for Healthcare Research and Quality (AHRQ). Its purpose is to learn about the effectiveness of contemporary surgical and radiation techniques for localized prostate cancer in terms of patient-reported outcomes via baseline, 6-month, and 12-month surveys, including side effects and complications of treatment.
• North Carolina-Louisiana Prostate Cancer Project (PCaP)
  • Prostate cancer patients from North Carolina and Louisiana were enrolled in the PCaP study, funded by the Department of Defense, to develop both effective therapies for advanced prostate cancer and techniques to distinguish between indolent and aggressive disease.
• Quality of Life in Prostate Cancer Project (QPCAP)
  • QPCaP evaluates the hypothesis that racial differences in long-term quality of life for prostate cancer survivors are the results of racial differences in pre-diagnosis health-related behaviors, socioeconomic status, and healthcare-seeking behaviors and beliefs.
• Adolescent and Young Adult Health Outcome and Patient Experience (AYA HOPE) Study
  • Compared with younger and older cancer patients, adolescents and young adults (ages 15 to 39 years old) with cancer have seen little or no improvement in cancer survival for decades. This research sought to identify factors that contribute to the poorer survival in adolescents and young adults.
• CDC Breast and Prostate Cancer Data Quality and Patterns of Care Study
  • This study involved researchers from the CDC and seven states to examine patterns of first-course treatment received by prostate cancer and female breast cancer patients.
• Measuring Your Health (MY-Health) Study
  • The MY-Health Study is funded by the National Institutes of Health at four research centers around the country to learn about the experiences of individuals in different communities who have been diagnosed with and treated for cancer, to determine the best questions that healthcare providers and researchers should ask to better understand the physical and emotional experiences of cancer patients, and to improve our understanding of the quality of life after a cancer diagnosis.
• Comparative Effectiveness Research (CER)
  • In response to the need for data to support comparative effectiveness, or patient-centered outcomes, research, the Agency for Healthcare Research and Quality and the CDC’s NPCR developed this special data collection enhancement project for breast, colon, and rectal cancers as well as chronic myeloid leukemia cases diagnosed in 2011. They also established sustainable procedures to gather more information on all cancer cases, including co-morbidities, height, weight, smoking status, detailed staging, census tract-level socioeconomic status variables, and recurrence.
• Patient-Centered Outcomes Research (PCOR)
  • After collecting data for the CDC-funded CER project, the LTR was awarded additional funds by the CDC to collect data on cancer recurrence and progression 5 years after diagnosis, as well as data on subsequent treatment, for the cases included in the original CER project. Because population-based cancer registries do not collect data on cancer recurrence and progression, successful collection of this information by LTR and other participating registries has provided useful data, in addition to opening opportunities for registries to enhance their ability to collect this data more efficiently.