Search Results: Surveys, Registries, & Interviews (30 results)

Relationships, Intimacy, and Self-Esteem among Sexual and Gender Minority Cancer Survivors (RISE) is a research study that focuses on the experiences of 18-39-year-old sexual and/or gender minority cancer survivors. Participants will be asked to complete an interview on relationships, self-esteem, and intimacy.

PROMISE is a nationwide registry of prostate cancer patients with inherited mutations;screening approximately 5,000 participants with a prostate cancer diagnosis.

The PROMISE team is studying how these mutations affect patient outcomes.

We hope to understand women’s preferences about the benefits and effects of cancer-preventing surgeries. In this survey of women ages 25-50 with an inherited BRCA1 or BRCA2 mutation and no personal history of cancer, we present scenarios and ask participants to make hypothetical choices. Your responses will help us to design educational tools for people who are at high risk of breast and ovarian cancer who face personal decisions about cancer prevention.

We are talking with African American adults about cancer genetic testing, including those that have received a positive cancer genetic testing result and people with a family member who received testing. 

This study is to understand the experiences of people who have received a negative genetic test result for a known familial hereditary cancer mutation (i.e., a “true negative” result) and determine what factors influence the presence of survivors’ guilt in these individuals.

Online survey for patients and caregivers focusing on multiple aspects of cancer to understand its emotional, physical, practical, and financial impact, so we can identify and address gaps in care and support.

Survey for cancer survivors ages 18-39 years old about sexual self-concept, sexual health knowledge, relationships and body image.

Explore women's lived experiences of sexuality after gynecological cancer treatment(s).

Researchers at the Mayo Clinic and McGill University are partnering with FORCE on a survey of women who have inherited mutations in BRCA1, BRCA2 or other genes (including PALB2, ATM, CHEK2, and others) related to increased breast cancer risk. We are interested in the effects of testing positive for an inherited mutation on decisions about the timing of pregnancy, breastfeeding, breast cancer screening and risk-reducing surgery. 

Modus Outcomes is seeking patients with stage III or IV ovarian cancer to participate in online interviews. We will ask you questions about your symptoms and how ovarian cancer impacts your life. Then, we will ask for feedback on questionnaires used in ovarian cancer studies.

Online survey for people with a family history of hereditary breast and ovarian cancer and Lynch syndrome about online health history-sharing.

This study aims to better understand how breast cancer surgery can impact mental health and wellness. We will also explore how breast cancer survivors view breast cancer surgery and medical tattooing following. Participation includes an optional information session and consultation with a medical tattoo artist. 

Stanford researchers invite people diagnosed with stage 0 to stage 3 breast cancer to take this 15 minute survey to share your thoughts about the advantages and disadvantages of participating in a new type of clinical trial called “a window opportunity” trial. will use this information to help design future clinical trials.

This study aims to explore family communication differences across Asian American families  about testing positive for an inherited mutation in BRCA1, BRCA2, ATM, BARD1, BRIP1, CHEK2, PALB2, PTEN, RAD51C, RAD51D, TP53 or another gene linked to hereditary breast and/or ovarian cancer. Participants will complete a 10–15-minute initial intake survey to confirm eligibility. Eligible participants will then be contacted to schedule a 30-45-minute-long interview over Zoom to explore these topics. After completion of the interview, participants will be entered into a raffle for two $50 Visa gift cards. There are no costs associated with participation. NOTE: This study is closed. 

This study focuses on cancer survivors’ needs during the transition into a new normal life after the completion of cancer treatment. The goal is to explore ways in which we can improve physical activity and diet among cancer survivors and address their challenges to develop and maintain an active and healthy lifestyle.

We specifically would like to work with and for cancer survivors who self-describe as people of color to understand how social structures, stress and environmental factors impact health behaviors and subsequent quality of life.

This study is seeking information about the personal experiences of uterine and ovarian cancer prevention and screening for people with Lynch syndrome. An online survey will allow participants to share their experiences which will ultimately help medical practitioners be more aware about the wants, needs, and decision-making strategies used by people with Lynch syndrome to preserve their gynecological health.

The goal of this study is to identify if there is a need for more specialized providers, specifically genetic counselors, to meet the needs of patients regarding fertility preservation and family planning prior to cancer treatment or preventative surgery. We hope to identify the appropriate setting and timeline for these services to streamline and enhance comprehensive patient care for patients with a hereditary breast or gynecologic cancer variant.

This study will survey individuals with a mutation in the BRCA1 or BRCA2 gene. We are seeking experiences and opinions of individuals regarding childbearing and reproductive choices. This will allow healthcare professionals, especially genetic counselors, to learn about what information is needed due to psychosocial and medical factors. The survey is approximately 25 minutes long to complete and is available online.

We are interviewing people who identify as Hispanic/Latinx/e with a genetic mutation associated with hereditary cancer and close family members who live in Latin America. This research study will describe genetic testing barriers and the communication of genetic risk to family members living in a Latin American country. The goal of this study is to improve the support that cancer genetic counselors can offer to individuals and their international family members. NOTE: This study is no longer enrolling. 

Researchers at the University of Kentucky are hoping to learn more about the relational experiences of individuals with hereditary breast cancer mutations who have navigated a double mastectomy while in a committed romantic relationship. They are particularly interested in the couples’ experience related to sexual intimacy before and after prophylactic surgical procedures. You do not have to live in Kentucky to participate. 

This study seeks to interview individuals who come from families with high cancer risk and/or who have tested positive for BRCA 1/2 genetic mutation. We are also interested in individuals who may be contemplating BRCA 1/2 genetic testing; those who feel they lack access to genetic testing or who feel they lack information and social and medical support with regard to getting access to genetic testing; those who have been diagnosed with breast cancer who may be at high risk for a range of hereditary cancer. We are especially hoping to reach racially and ethnically diverse males and females whose experiences are often left out of research studies.

Global Patients along with IQVIATM, a worldwide healthcare consulting firm, is currently conducting a research study, to better understand the experience of patients and/or caregivers of patients living with metastatic pancreatic cancer.

Researchers at MD Anderson Cancer Center are conducting telephone interviews with individuals who have received modified (also known as reclassified or amended) genetic test results in any cancer related gene. We are interested in learning about the experience of receiving a modified test result and decisions made. 

The All of Us Research Program is seeking one million people from across the U.S. to help build one of the most diverse health databases in history. We welcome participants from all backgrounds. People who join will share information about their health, habits, and what it’s like where they live. By looking for patterns, researchers may learn more about what affects people’s health.

This is a study on how the practice of crowdfunding affects the experience of having cancer. With the support of the National Science Foundation (NSF award #2021152), the researcher is interviewing cancer patients/survivors and their supporters about their use of crowdfunding platforms like GoFundMe. earcher is interviewing cancer patients/survivors and their supporters about their use of crowdfunding platforms like GoFundMe. For more information, visit studyingcrowdfundingforcancer.net. If you'd like to share your story in an interview, please email Martha Lincoln at [email protected].

ICARE is a registry of individuals interested in participating in inherited cancer research, through which data and samples are collected to contribute to research. Participants are also provided with ongoing research and clinical updates and informed about other research opportunities for which they might be eligible. Participants are recruited across the United States and beyond. There is no cost to participate, and all materials can be completed online.

We are investigating the relation of adversity, pain, and fear of cancer recurrence among adult cancer survivors. Participation involves completing a 30-minute computerized survey online from your home computer. No compensation is being offered for participation in this research study.

Women with a BRCA1 or BRCA2 mutation are at higher risk of developing breast and/or ovarian cancer compared to women in the general population. There are various options available to these women to help reduce or manage these risks, including preventive surgery. We are conducting an important new study to examine and understand cancer prevention decisions and outcomes in these women.

Those who carry the BRCA1, BRCA2 or PALB2 gene mutations experience a higher lifetime risk of developing breast and ovarian cancer, but we need to know more about the other genetic and non-genetic factors that may also influence risk. This study follows women with these gene mutations over time, striving to build the evidence we need to help them and others make better decisions to protect their health.

Researchers from the University of Illinois, Chicago Cancer Center invite breast cancer survivors who were diagnosed under the age of 45 to share their diagnosis stories. You will be asked to use your own words to share your experience on an online questionnaire.