Special Studies

Assessing Cervical Cancer Healthcare Inequities in Diverse Populations: The ACHIEVE Study

The New Jersey State Cancer Registry is collaborating with Columbia University to recruit approximately 1,200 women diagnosed with invasive cervical cancer to participate in a baseline survey, follow-up survey, and medical records abstraction. The surveys and medical records data will help researchers to identify social and structural factors that impact receipt of guideline-concordant care for and survival from invasive cervical cancer.

Funding source: National Institutes of Health

 

The Empowered Survivor Trial: Enhancing Self Care Among Oral Cancer Survivors 

 The New Jersey Cancer Registry is collaborating with the Rutgers Cancer Institute of New Jersey and Cancer Registry of Greater California in evaluating an online intervention, called Empowered Survivor, which is aimed at improving self-management among oral and oropharyngeal cancer survivors. The intervention will be evaluated against another free online self-management tool, called Springboard Beyond Cancer. 600 patients who have completed treatment between one and three years ago and are currently cancer-free will be recruited and randomly assigned to Empowered Survivor or Springboard Beyond Cancer. Participants will use these online tools at home on a desktop computer, iPad, or smart phone. Survey data will be collected at baseline, 2-, and 6-months post-baseline.

Funding source: National Institutes of Health (NIH) – National Cancer Institute

 

Awareness, Attitudes, and Apprehensions About Breast Cancer Among South Asians Living in the U.S

The New Jersey State Cancer Registry is collaborating with the Center for South Asian Quantitative Health and Education at Rutgers School of Public Health to recruit women who are South Asian and have been diagnosed with breast cancer for focus groups for the study. The NJSCR will recruit approximately 18-20 individuals for study participation.  Eligible participants will be asked to complete a 10 minute telephone interview and participate in an online focus group. The purpose of this pilot study is to assess awareness, attitudes and apprehensions about breast cancer survivorship, cancer care and follow-up care among South Asian women living in the U.S. The results from this pilot study will be used to demonstrate the feasibility of recruiting 100 South Asian women breast cancer survivors from NJ for Cancer Analytics & South Asian Health - Breast Cancer Survivor Study (CANSAH-BC).

Funding source: Rutgers Cancer Institute of New Jersey

 

RESPOND - Research on Prostate Cancer in Men of African Ancestry: Defining the Roles of Genetics, Tumor Markers and Social Stress 

The New Jersey State Cancer Registry is collaborating with researchers at the University of Southern California, Rutgers Cancer Institute of New Jersey, and other institutions on a nationwide study of prostate cancer in African American men. The RESPOND study aims to evaluate factors explaining why African-American men are more likely to be diagnosed with prostate cancer and to die of the disease, compared to men of other racial/ethnic groups, and researchers will investigate lifestyle, genetic, and other factors. The NJSCR will recruit approximately 1000 individuals for study participation. Participants will be asked to complete a survey by mail or online, provide a saliva sample, and give permission for researchers to access prostate cancer tissue that has already been collected as part of treatment by their physician.

Funding Sources: National Institutes of Health (NIH) - National Cancer Institute and National Institute for Minority Health and Health Disparities. Additional funding is provided by the Prostate Cancer Foundation.

 

DIVERSITY - Identifying Racial Disparities in a Diverse Population of Lung Cancer Survivors

 

The New Jersey State Cancer Registry (NJSCR) is collaborating with the Rutgers Cancer Institute of New Jersey in a research study called Diversity. The purpose of the study is to measure any racial differences in receipt of post-treatment follow-up care and surveillance in early-stage (Stage I and II) lung cancer survivors (diagnosed and treated within 5 years). This includes receipt of regular surveillance scans and follow-up visits, smoking cessation assessment and age-appropriate cancer screening. Eligible participants will be identified through the NJSCR and we will enroll 50 non-Hispanic Blacks and 50 non-Hispanic Whites survivors. Eligible participants are asked to complete an initial survey and a request to release medical records (for this study only).

Funding source: Rutgers Cancer Institute of New Jersey and the American Cancer Society

This study is closed to enrollment and is in the data analysis phase.

  

CATCHMENT - Cancer Treatment and Survivorship Experiences Among New Jersey Residents 

The New Jersey State Cancer Registry (NJSCR) is collaborating with the Rutgers Cancer Institute of New Jersey in a research study called “Cancer Treatment and Survivorship Experiences Among New Jersey Residents.” This study aims to survey cancer survivors in the catchment area of New Jersey to better understand their unique needs and potential issues with survivorship. We hope to capture the experience of 300 survivors of urinary bladder, female breast (including DCIS), female gynecological, colorectal, lung, melanoma, prostate, and thyroid in New Jersey. 

Funding source: Rutgers Cancer Institute of New Jersey

This study is closed to enrollment and is in the data analysis phase.

 

Comparative Effectiveness Analysis of Surgery and Radiation (CEASAR) for Localized Prostate Cancer

 

www.ceasarprostate.org

The New Jersey State Cancer Registry (NJSCR) will be collaborating with Vanderbilt University Medical Center to conduct a 10-year follow-up survey and medical records abstraction of the NJ segment of the CEASAR cohort. Men originally enrolled in the CEASAR Study in 2011 will be eligible to participate. The follow-up survey data and information from medical records will enable comparisons of oncologic outcomes and quality of life outcomes in men undergoing radiation therapy, surgery, and active surveillance for localized prostate cancer, thereby providing information to power shared-decision making process between patients and their providers.

Funding source: National Institutes of Health

This study is closed to enrollment and is in the data analysis phase.

 

GRACE - Genetic Risk Assessment for Cancer Education and Empowerment

 

The New Jersey State Cancer Registry is collaborating with the Rutgers Cancer Institute to find better strategies to prevent and control cancer in women and their families. The NJSCR will recruit approximately 600 women diagnosed with breast and ovarian cancer for study participation. Eligible participants will be randomly assigned to one of three study groups and complete three surveys over the course of one year. The surveys are offered in both English and Spanish. 

Funding Source: National Cancer Institute

 

Facebook Intervention for Young Onset Melanoma Patients and Families

The New Jersey State Cancer Registry is collaborating with the Rutgers Cancer Institute of New Jersey to evaluate the impact of an innovative family Facebook intervention to promote skin examinations and sun protection among young onset melanoma patients and their first-degree relatives. Eligible participants and their family members will be randomly assigned to a Facebook group. Study participation involves completing three online surveys over the course of 6-8 months.

Funding source: Rutgers Cancer Institute of New Jersey

 

EXCELS-Extended Cancer Education for Long-term Survivors in Primary Care 

Excels study logo

The New Jersey State Cancer Registry (NJSCR) is collaborating with Rutgers Robert Wood Johnson Medical School to determine whether certain types of educational materials and communications are better suited to help people make health and medical decisions after they have completed initial cancer treatment. The NJSCR will recruit approximately 1,200 individuals for study participation. Eligible participants will be randomly assigned to a study group and complete four surveys over a period of 18 months. The study groups are Web Education and Health Coaching, Health Coaching, Web Education, and Print Education Materials.

Funding source: Rutgers Robert Wood Johnson Medical School

This study is closed to enrollment and is in the data analysis phase.

 

Internet Intervention for Sun Protection and Skin Self-Check Behaviors

The New Jersey State Cancer Registry (NJSCR) is collaborating with the Rutgers Cancer Institute to test an internet program to help individuals diagnosed with melanoma perform skin self-checks and engage in sun protection behaviors. The NJSCR will recruit approximately 500 individuals for study participation. Eligible participants will be randomly assigned to use the internet program either immediately or after waiting for 12 months. Study participation involves completing four surveys over a period of 12 months.

Funding source: Rutgers Cancer Institute

This study is closed to enrollment and is in the data analysis phase.

 

WTC- CAncer Risk Epidemiology Study (WTC-CARES)

WTC logo 2

 The New Jersey State Cancer Registry (NJSCR) is collaborating with the Rutgers Environmental and Occupational Health Sciences Institute to learn about the possible differences in risk factors for head and neck cancer between people who were and were not at the World Trade Center disaster. Eligible participants will be asked to complete a one-time survey over the phone or via secure web link. The survey is offered in both English and Spanish.

Funding Source: Centers for Disease Control and Prevention  

 

Peer Mentoring to Promote Follow-Up Care Self-Management for Adolescent and Young Adult (AYA) Childhood Cancer Survivors

The New Jersey State Cancer Registry (NJSCR) is collaborating with researchers at the Rutgers Cancer Institute of New Jersey on a study of young adult survivors of childhood cancer. The goal of the study is to develop and test a peer mentoring program to help young adult survivors of childhood cancer aged 18-25 improve their self-management skills for long-term follow-up care. Eligible individuals have been diagnosed with any type of invasive cancer, and were between the ages of 10 and 20 at the time of diagnosis. Eligible participants will be randomized to either enroll in a peer mentoring program or receive intervention materials by email or postal mail.

Funding Source: Rutgers Cancer Institute of New Jersey

This study is closed to enrollment and is in the data analysis phase.

 

Medullary Thyroid Carcinoma Surveillance Study: a Case-Series Registry

MTC studyMTC Study

The Medullary Thyroid Carcinoma Surveillance Study is being conducted by the New Jersey State Cancer Registry (NJSCR) in collaboration with United BioSource Corporation to identify possible risk factors for developing medullary thyroid cancer (MTC), including history of treatment with liraglutide, a prescription medicine for type 2 diabetes. This study is taking place in more than 20 states across the country and involves a telephone interview with adults who have been diagnosed with MTC.

Funding source: United BioSource Corporation

 

Women's Circle of Health Study

womens circle

The Women’s Circle of Health study is a collaboration of several institutions, including the Rutgers Cancer Institute of New Jersey, Roswell Park Cancer Institute, the New Jersey Department of Health, Rutgers School of Public Health, and Mount Sinai School of Medicine. The study aims to evaluate factors explaining the earlier age at diagnosis and the more aggressive nature of breast cancer in African American women, as well as to evaluate survival in African American and Hispanic women diagnosed with breast cancer. Participants are asked to complete an interview, which includes answering questions regarding demographic, medical, reproductive, lifestyle and diet histories, measuring body size such as weight, height, waist and hip circumferences, providing a saliva sample, and filling out a questionnaire about usual dietary intake.

Funding Sources: National Institutes of Health(NIH) - National Cancer Institute - New Jersey Commission on Cancer Research

 

Sun Protection Among Families Coping With Early Onset Melanoma: A Pilot Study

The New Jersey State Cancer Registry (NJSCR) is collaborating with Rutgers Cancer Institute of Jersey on a study about the experiences of individuals in different communities who have been diagnosed with Melanoma. The purpose of this study is to learn about families’ sun protection habits, and to examine the level of communication between patients with melanoma (diagnosed before the age of 45) with their family members in regards to their sun protection and skin self-examination (SSE) practices. Eligible individuals with be asked to complete surveys and participate in a Facebook intervention group.

Funding source: Rutgers Cancer Institute of New Jersey

 

Case Investigation of Cervical Cancer (CICC)

The New Jersey State Cancer Registry (NJSCR) is collaborating with investigators at Battelle Memorial Institute, the Centers for Disease Control and Prevention, and the state cancer registries in Louisiana and Michigan on the CICC study. The purpose of this study is to better understand the screening and follow-up experiences of women, prior to being diagnosed with cervical cancer. Eligible participants will be asked to complete one survey as well as an optional request to release medical records (for this study only). The survey will be offered in both English and Spanish.

Funding Source: Centers for Disease Control and Prevention

 

Assessing Cancer Survivors’ Willingness to Participate in Research Studies

The New Jersey State Cancer Registry is collaborating with the Surveillance, Epidemiology, and End Results Program of the National Cancer Institute to measure cancer survivors’ willingness to participate in various types of research to support investigations into improving clinical cancer outcomes. Eligible individuals will be asked to complete a survey. An individual may complete the survey either on paper in English or Spanish, over the telephone in English or Spanish, or on the web in English.

Funding Source: National Cancer Institute

This study is closed to enrollment and is in the data analysis phase.

 

Forteo Post Approval Surveillance Study: Case Series

This study, conducted by RTI Health Solutions on behalf of Eli Lilly and Company, is investigating the safety of the osteoporosis drug, Forteo. The objectives for this study are to learn more about factors that may be related to the development of osteosarcoma or similar cancers in adult and to monitor for Forteo exposures in adult osteosarcoma patients.

Funding Source: RTI Health Solutions

This study is closed to enrollment and is in the data analysis phase.

 

Improving Patient Access to Quality Cancer Treatment (IMPACT)

Impact

The Improving Patient Access to Quality Cancer Treatment (IMPACT) study is being conducted by the New Jersey State Cancer Registry (NJSCR) in conjunction with the Rutgers Cancer Institute of New Jersey. The aim of the study is to improve understanding of patients’ access to quality cancer care in the State of New Jersey and to learn more about quality of life after a cancer diagnosis. Eligible individuals will be asked to complete a survey.

Funding source: Rutgers Cancer Institute of New Jersey
This study is closed to enrollment and is in the data analysis phase.

 

Epidemiologic Study of Hepatocellular Carcinoma

The purpose of the study is to investigate how dietary, physical activity and certain medical factors may cause liver cancer. New Jersey and Connecticut residents newly diagnosed with hepatocellular cancer are eligible for the study. Telephone interviews are conducted to collect information on demographics, physical activity, medical history and lifestyle factors. Information on dietary habits are collected through food frequency questionnaires. Saliva samples are collected for genetic testing related to immune and other cell functions, and for analysis of hepatitis B and hepatitis C virus infections.

Source: NIH (National Institutes of Health) - National Cancer Institute

This study is closed to enrollment and is in the data analysis phase.

 

African American Cancer Epidemiology Study (AACES)

African American Cancer epi study

https://aaces.emory.edu/ 

This study is conducted in collaboration with researchers at Emory University, in addition to sites in Georgia, Tennessee, South Carolina, Alabama, Ohio, Michigan, Illinois, North Carolina, and California. The purpose of this study is to gather information on ovarian cancer risk factors (including genetics), treatments, and outcomes in African American women with ovarian cancer, and the evaluation of their impact on survival. The study will enroll 350 patients, in addition to the previously enrolled approximately 600 patients, over a period of 3 years through rapid case ascertainment. Eligible individuals have been newly diagnosed with invasive ovarian cancer and identify as African American. Women who decide to participate will have a telephone interview, complete a diet survey, and provide a saliva or blood sample (optional). 

 

Funding Source: NIH (National Institutes of Health) - National Cancer Institute

 

Measuring Your Health (MY-Health): Validation Study of Health Outcomes Measures
“MY-Health Study”

my health logo
http://www.nihpromis.org/about/abouthome

The New Jersey State Cancer Registry (NJSCR) is collaborating with Georgetown University on a study to validate the PROMIS (Patient Reported Outcomes Measurement Information System) measures in cancer patients. The purpose of this study is to measure health, well-being, physical and emotional functions, demographic information and self-reported disease severity/status and treatment. Eligible individuals are asked to complete an initial survey, a follow-up survey 6 months after the first and an optional request to release medical records (for this study only). This study is currently in the data analysis phase.

Source: National Institutes of Health(NIH) - National Cancer Institute

This study is closed to enrollment and is in the data analysis phase.

 

Patterns of Care/Quality of Care Study
http://appliedresearch.cancer.gov/poc/

The Patterns of Care/Quality of Care Study is part of the National Cancer Institute’s effort to document and verify types of treatment that patients are receiving for specific types of cancer in different geographic areas of the United States. Each year the study reviews different cancer sites.

Funding Source: National Cancer Institute / SEER Rapid Response Study

This study is closed to enrollment and is in the data analysis phase.

 

Comparative Effectiveness Analysis of Surgery and Radiation (CEASAR) for Localized Prostate Cancer

ceaser studay
www.ceasarprostate.org

The New Jersey State Cancer Registry (NJSCR) is collaborating with Vanderbilt University to conduct the CEASAR study. The goal of the study is to compare the effectiveness of various therapies for localized prostate cancer in terms of patient-reported outcomes, side effects, quality of life, and complications of treatment. By figuring out what treatments "work best, in which patients and in whose hands", it will help men with prostate cancer make better decisions regarding their care. The first phase of the study includes a baseline survey, a six-month follow-up survey, and a twelve-month follow-up survey. The second phase of the study includes a three-year follow-up survey, and a five-year follow-up survey.

Funding source: Patient-Centered Outcomes Research Institute

This study is closed to enrollment and is in the data analysis phase. 

Last Reviewed: 3/28/2024