Search Results: Surveys, Registries, & Interviews (36 results)
PROMISE Registry: A Prostate Cancer Registry of Outcomes and Germline Mutations for Improved Survival and Treatment Effectiveness
https://www.facingourrisk.org/research-clinical-trials/study/149/promise-registry-a-prostate-cancer-registry-of-outcomes-and-germline-mutations-for-improved-survival-and-treatment-effectiveness
Surveys, Registries, Interviews
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.
Preferences Survey for Women With an Inherited BRCA Mutation and Without a Cancer Diagnosis
https://www.facingourrisk.org/research-clinical-trials/study/239/preferences-survey-for-women-with-an-inherited-brca-mutation-and-without-a-cancer-diagnosis
Surveys, Registries, Interviews
Online survey for women with a BRCA1 or BRCA2 inherited mutation and no personal history of cancer.
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.
Kindred Study
https://www.facingourrisk.org/research-clinical-trials/study/255/kindred
Surveys, Registries, Interviews
Interviews with African American people who tested positive for a genetic mutation
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.
What Factors Influence Survivors’ Guilt in Individuals Who Tested Negative for a Known Hereditary Cancer Syndrome?
https://www.facingourrisk.org/research-clinical-trials/study/264/survey-for-people-who-received-a-negative-genetic-test-result-for-a-known-mutation-in-the-family
Surveys, Registries, Interviews
People who received a negative genetic test result
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.
Intimacy, and Self-Esteem among Sexual and Gender Minority Cancer Survivors (RISE-SGM)
https://www.facingourrisk.org/research-clinical-trials/study/265/an-interview-about-intimacy-and-self-esteem-for-sexual-and-gender-minority-cancer-survivors
Surveys, Registries, Interviews
A one-time interview study to explore experiences with sexual functioning, sexual relationships, sexual self-concept, and self-esteem of 18-39-year-old sexual and/or gender minority cancer survivors
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.
Cancer Experience Registry
https://www.facingourrisk.org/research-clinical-trials/study/248/cancer-experience-registry
Surveys, Registries, Interviews
Online survey for patients and caregivers focusing on multiple aspects of cancer
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.
Self -Perception and Intimacy After the Cancer Experience (SPICE)
https://www.facingourrisk.org/research-clinical-trials/study/247/self-perception-and-intimacy-after-the-cancer-experience-spice
Surveys, Registries, Interviews
Online survey for cancer survivors ages 18-39 years old about sexual health
Survey for cancer survivors ages 18-39 years old about sexual self-concept, sexual health knowledge, relationships and body image.
Women's Sexuality After Gynecological Cancer Treatments
https://www.facingourrisk.org/research-clinical-trials/study/243/womens-sexuality-after-gynecological-cancer-treatments
Surveys, Registries, Interviews
Virtual or in-person interview to share personal experiences of sexuality after gynecological cancer treatment(s).
Explore women's lived experiences of sexuality after gynecological cancer treatment(s).
Survey for Women at High Risk for Breast Cancer on Knowledge and Perspectives about Breast Cancer Risk Factors and Screening
https://www.facingourrisk.org/research-clinical-trials/study/238/survey-for-women-at-high-risk-for-breast-cancer-on-knowledge-and-perspectives-about-breast-cancer-risk-factors-and-screening
Surveys, Registries, Interviews
Online survey for women with an ATM, BARD1, BRCA1, BRCA2, CDH1, CHEK2, PALB2, PTEN, RAD51C, RAD51D, STK11 or TP53 inherited mutation.
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.
Paid Research Interview Opportunity: Stage III or IV Ovarian Cancer Patients
https://www.facingourrisk.org/research-clinical-trials/study/237/paid-research-interview-opportunity-patients-receiving-neoadjuvant-or-first-line-treatment-for-ovarian-cancer
Surveys, Registries, Interviews
Interview for people with stage III or IV ovarian cancer
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.
Perceptions of an Online Platform to Facilitate Sharing of Family Health History
https://www.facingourrisk.org/research-clinical-trials/study/241/perceptions-of-an-online-platform-to-facilitate-sharing-of-family-health-history
Surveys, Registries, Interviews
Online survey for people with an ATM, BARD1, BRCA1, BRCA2, CDH1, CHEK2, PALB2, PMS2, PTEN, RAD51C, RAD51D, STK11, TP53 inherited mutation or Lynch syndrome.
Online survey for people with a family history of hereditary breast and ovarian cancer and Lynch syndrome about online health history-sharing.
Project MTFM: Medical Tattooing Following Mastectomy
https://www.facingourrisk.org/research-clinical-trials/study/233/project-mtfm-medical-tattooing-following-mastectomy
Surveys, Registries, Interviews
Survey for breast cancer survivors following mastectomy
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.
Survey for People Diagnosed with Breast Cancer to Provide Feedback on a New Type of Clinical Trial
https://www.facingourrisk.org/research-clinical-trials/study/226/survey-for-people-diagnosed-with-breast-cancer-to-provide-feedback-on-a-new-type-of-clinical-trial
Surveys, Registries, Interviews
Survey for people diagnosed with stage 0 - stage 3 breast cancer
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.
Differences in Family Communication about Positive Genetic Test Results Between Asian Americans
https://www.facingourrisk.org/research-clinical-trials/study/208/differences-in-family-communication-about-positive-genetic-test-results-between-asian-americans
Surveys, Registries, Interviews
Interview for Asian Americans with a mutation in BRCA1, BRCA2, ATM, CHEK2, PALB2 or other gene linked to breast or ovarian cancer risk
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.
Factors Influencing Disparities in Quality of Life among People of Color Affected by Cancer
https://www.facingourrisk.org/research-clinical-trials/study/223/factors-influencing-disparities-in-quality-of-life-among-people-of-color-affected-by-cancer
Surveys, Registries, Interviews
Survey for people of color who have completed treatment for cancer
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.
Assessing Decisions about Uterine and Ovarian Cancer Prevention by People with Lynch Syndrome
https://www.facingourrisk.org/research-clinical-trials/study/224/assessing-decisions-about-uterine-and-ovarian-cancer-prevention-by-people-with-lynch-syndrome
Surveys, Registries, Interviews
Online survey for people with Lynch syndrome
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.
Exploring the Fertility Preservation Needs of Individuals with Positive Genetic Test Results
https://www.facingourrisk.org/research-clinical-trials/study/211/exploring-the-fertility-preservation-needs-of-individuals-with-positive-genetic-test-results
Surveys, Registries, Interviews
Survey and video interview for people who tested positive for an inherited mutation
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.
Factors Influencing Reproductive Decision-Making in Individuals with a BRCA1 or BRCA2 Gene Mutation
https://www.facingourrisk.org/research-clinical-trials/study/215/factors-influencing-reproductive-decision-making-in-individuals-with-a-brca1-or-brca2-gene-mutation
Surveys, Registries, Interviews
Survey for people with a BRCA1 or BRCA2 mutation
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.
Interview Study about Barriers to Genetic Testing of Family Members in Latin America
https://www.facingourrisk.org/research-clinical-trials/study/212/interview-study-about-barriers-to-genetic-testing-of-family-members-in-latin-america
Surveys, Registries, Interviews
People with a hereditary cancer gene mutation and relatives living in Latin America
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.
Research Opportunity for Previvors and their Romantic Partners
https://www.facingourrisk.org/research-clinical-trials/study/207/research-opportunity-for-previvors-and-their-romantic-partners
Surveys, Registries, Interviews
Interview for people with inherited mutations who had risk-reducing mastectomy and their partners
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.
BRCA 1 and 2: Interviews on Genetic Testing and Individual Experiences
https://www.facingourrisk.org/research-clinical-trials/study/169/brca-1-and-2-interviews-on-genetic-testing-and-individual-experiences
Surveys, Registries, Interviews
People with or without cancer who have had or are considering BRCA testing
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.
Metastatic Pancreatic Cancer in US
https://www.facingourrisk.org/research-clinical-trials/study/194/metastatic-pancreatic-cancer-in-us
Surveys, Registries, Interviews
People with metastatic pancreatic cancer and their caregivers
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.
Interviews for people with a genetic test result that was later reclassified
https://www.facingourrisk.org/research-clinical-trials/study/193/interviews-for-people-with-a-genetic-test-result-that-was-later-reclassified
Surveys, Registries, Interviews
People with a genetic test result that was later reclassified
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.
All of Us Research Program
https://www.facingourrisk.org/research-clinical-trials/study/197/all-of-us-research-program
Surveys, Registries, Interviews
Anyone age 18 or over
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.
Studying Crowdfunding for Cancer
https://www.facingourrisk.org/research-clinical-trials/study/187/studying-crowdfunding-for-cancer
Surveys, Registries, Interviews
Cancer survivors who have used crowdfunding to help cover cancer-related costs
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].
Inherited Cancer Registry (ICARE): Contribute to Research While Staying Informed
https://www.facingourrisk.org/research-clinical-trials/study/195/inherited-cancer-registry-icare-contribute-to-research-while-staying-informed
Surveys, Registries, Interviews
People with an inherited mutation or cancer in the family
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.
Fear of Recurrence, Adversity, and Pain
https://www.facingourrisk.org/research-clinical-trials/study/161/fear-of-recurrence-adversity-and-pain
Surveys, Registries, Interviews
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.
A Survey on Options for Managing Cancer Risk Among Women with a BRCA1 or BRCA2 Mutation
https://www.facingourrisk.org/research-clinical-trials/study/119/a-survey-on-options-for-managing-cancer-risk-among-women-with-a-brca1-or-brca2-mutation
Surveys, Registries, Interviews
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.
The Risk Factor Analysis of Hereditary Breast and Ovarian Cancer In Women with BRCA1, BRCA2 or PALB2 Mutations
https://www.facingourrisk.org/research-clinical-trials/study/120/the-risk-factor-analysis-of-hereditary-breast-and-ovarian-cancer-in-women-with-brca1-brca2-or-palb2-mutations
Surveys, Registries, Interviews
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.
Diagnosis of Breast Cancer in Young Women - Share Your Story
https://www.facingourrisk.org/research-clinical-trials/study/113/diagnosis-of-breast-cancer-in-young-women-share-your-story
Surveys, Registries, Interviews
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.
Metastatic Prostate Cancer Project
https://www.facingourrisk.org/research-clinical-trials/study/70/metastatic-prostate-cancer-project
Surveys, Registries, Interviews
The Metastatic Prostate Cancer Project is a nationwide genomic research study for men with advanced and/or metastatic prostate cancer. Patients can join online and participate by sharing their medical information and samples. The goal of the project is to generate a comprehensive database that will be shared with the entire research community to accelerate discoveries in prostate cancer.
The Metastatic Breast Cancer Project
https://www.facingourrisk.org/research-clinical-trials/study/60/the-metastatic-breast-cancer-project
Surveys, Registries, Interviews
The Metastatic Breast Cancer Project is a patient-partnered initiative that directly engages patients across the US & Canada to transform our understanding of metastatic breast cancer. Patients participate by sharing their medical information, tumor samples, and their voices, partnering with the project team to accelerate discoveries. There is no cost to participate and only minimal effort is required to have a major impact.
Connect My Variant
https://www.facingourrisk.org/research-clinical-trials/study/90/connect-my-variant
Surveys, Registries, Interviews
Researchers at the University of Washington (UW) are recruiting participants with known inherited mutation. We aim to help participants talk to relatives (both immediate and distant) about their family history and genetic test results, to connect them with others who have the same variant, and to their family trees together. The study provides tools and resources to help at-risk relatives get genetic testing through their own local doctors.
Breast Cancer Treatment in Women with PALB2 Mutations
https://www.facingourrisk.org/research-clinical-trials/study/85/breast-cancer-treatment-in-women-with-palb2-mutations
Surveys, Registries, Interviews
The PALB2 Study is an international research study to better understand breast cancer treatment among women with a PALB2 gene mutation. Participants are asked to complete online or paper study questionnaires (every two years for 10 years) and share their family history, medical, and genetics records.
Identification and Analysis of Families With Genetic Susceptibility To Cancer Registry
https://www.facingourrisk.org/research-clinical-trials/study/33/identification-and-analysis-of-families-with-genetic-susceptibility-to-cancer-registry
Surveys, Registries, Interviews
The research laboratory at the Abramson Cancer Center is studying genetic sources of cancer risk and currently has one of the largest collections (also called a registry) of families with known or suspected risk in the world. A number of research projects are performed in collaboration with this registry. Research participants receive a numerical identification number that protects their privacy. Collaborating centers do not have access to personal identifiers such as names and dates of birth because only the numerical identifiers are shared.
For more information visit basser.org/researchregistry.
Prospective Registry Of MultiPlex Testing (PROMPT)
https://www.facingourrisk.org/research-clinical-trials/study/50/prompt
Surveys, Registries, Interviews
PROMPT is an online research registry for people who have had genetic panel testing (also known as multiplex testing) — a newer form of genetic testing that looks for mutations in several different genes at once. All genes on the panels have been linked to an increased risk of cancer, but some risks are better known than others.
The goal of the PROMPT Registry is to follow people with mutations or variants in genes on these panels, so that patients, physicians, and researchers can more clearly understand these lesser-known risks.
About FORCE
FORCE is a national nonprofit organization, established in 1999. Our mission is to improve the lives of individuals and families affected by adult hereditary cancers.