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Our Featured Research Page lists cancer prevention, treatment and quality of life studies enrolling people with or at high risk for hereditary cancers. You can do a quick search to filter our featured studies by cancer type, study type or key word, or a more in-depth search through clinicaltrials.gov.

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

1 through 30 of 31
Interview Study: Exploring Gender Diverse Experiences of Hereditary Cancer Risk

Surveys, Registries, Interviews
People with elevated cancer risk who identify as trans* or nonbinary

Interview Study: Exploring Gender Diverse Experiences of Hereditary Cancer Risk

Are you a gender diverse previvor or patient who would like to share your story? A Johns Hopkins genetic counseling student is conducting an interview study exploring gender diverse folks’ experiences of hereditary cancer care, with the aim of better educating providers about LGBTQ+ needs and concerns. We are conducting interviews over Zoom with individuals who qualify. If you are interested in participating, contact Sarah Roth at sarahroth@jhu.edu

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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

Differences in Family Communication about Positive Genetic Test Results Between Asian Americans

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.

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Survey about Endometrial Cancer Risk and Risk-Reducing Surgery for Women with a BRCA1/2 Mutation or Mutation in the Family

Surveys, Registries, Interviews
Women with a BRCA mutation or from a family with a BRCA mutation

Survey about Endometrial Cancer Risk and Risk-Reducing Surgery for Women with a BRCA1/2 Mutation or Mutation in the Family

Researchers at the Mayo Clinic, McGill University and FORCE are conducting a survey of women with a BRCA1/2 mutation, or who come from a family with a known BRCA mutation but tested negative, or have not had testing. Our goal is to learn about the information needs and decisions made related to endometrial cancer risk. https://tinyurl.com/BRCAMUTATION

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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

Factors Influencing Disparities in Quality of Life among People of Color Affected by 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.

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Assessing Decisions about Uterine and Ovarian Cancer Prevention by People with Lynch Syndrome

Surveys, Registries, Interviews
Online survey for people with Lynch syndrome

Assessing Decisions about Uterine and Ovarian Cancer Prevention by 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.

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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

Exploring the Fertility Preservation Needs of Individuals with Positive Genetic Test Results

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.

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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

Factors Influencing Reproductive Decision-Making in Individuals with a BRCA1 or BRCA2 Gene 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.

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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

Interview Study about Barriers to Genetic Testing of Family Members 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.

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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

Research Opportunity for Previvors and their Romantic 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. 

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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

BRCA 1 and 2: Interviews on Genetic Testing and Individual Experiences

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.

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Zoom Interviews to Explore Ideas about Long-Term Follow-Up Cancer Genetic Counseling

Surveys, Registries, Interviews
Interviews with adults that have recently met with a cancer genetic counselor in the U.S., regardless of genetic testing outcome

Zoom Interviews to Explore Ideas about Long-Term Follow-Up Cancer Genetic Counseling

This study aims to explore perceptions of patients and genetic counselors about long-term follow-up in cancer genetic counseling, including if and how patients would like additional follow-up with a genetic counselor beyond the pre- and post-test counseling session. If you wish to participate, email the student investigator to schedule a voluntary 30–60-minute Zoom interview. All information will be de-identified. There are no costs associated with participation.

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Metastatic Pancreatic Cancer in US

Surveys, Registries, Interviews
People with metastatic pancreatic cancer and their caregivers

Metastatic Pancreatic Cancer in US

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.

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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

Interviews for 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. 

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All of Us Research Program

Surveys, Registries, Interviews
Anyone age 18 or over

All of Us Research Program

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.

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Studying Crowdfunding for Cancer

Surveys, Registries, Interviews
Cancer survivors who have used crowdfunding to help cover cancer-related costs

Studying Crowdfunding for Cancer

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 mlincoln@sfsu.edu.

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Interview about Hispanic/Latino Community Experiences Accessing Genetic Testing for Hereditary Cancer Risk

Surveys, Registries, Interviews
Hispanic/Latino people with a personal diagnosis of cancer or a family history of cancer

Interview Study about Hispanic/Latino Community Experiences Accessing Genetic Testing for Hereditary Cancer Risk

This study is looking at how to improve access to genetic testing among Hispanic/Latino populations in the U.S. We are conducting interviews with people in the Hispanic/Latino community who have either received genetic testing for hereditary cancer risk, or who have a family history of hereditary cancer and/or cancer diagnosis. This study could help develop policy options to inform how to improve access to genetic testing. Email Amanda Gutierrez at ag3@bcm.edu if you are interested in participating.

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Inherited Cancer Registry (ICARE): Contribute to Research While Staying Informed

Surveys, Registries, Interviews
People with an inherited mutation or cancer in the family

Inherited Cancer Registry (ICARE): Contribute to Research While Staying Informed

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.

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Survey: How Willing are You to Participate in Different Types of Clinical Trials for the Prevention of Breast Cancer?

Surveys, Registries, Interviews

Survey: How Willing are You to Participate in Different Types of Clinical Trials for the Prevention of Breast Cancer?

This study looks at why women at an increased risk of developing breast cancer are interested or uninterested in participating in breast cancer prevention clinical trials. The study consists of a 10-15 minute (max) anonymous questionnaire that asks hypothetical questions about participating in clinical trials with various study designs. This study’s findings may be used to better inform how to best design clinical trials aimed at the prevention of a breast cancer in the future. 

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Understanding the Experiences of Black Women after Cancer Genetic Testing

Surveys, Registries, Interviews
Black women who have tested positive for an inherited mutation

Interview: Understanding the Experiences of Black Women after Cancer Genetic Testing

We are looking to interview Black women who have received a positive result in a cancer-associated genetic test. We want to hear your story. This research will look at Black women's experiences with cancer genetic testing. If you decide to take part in the study, you would participate in an approximately hour-long phone interview. Participants will be compensated for their time with a $20 gift card. Contact Malika Sud at msud@bu.edu for more information or to participate. 

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Fear of Recurrence, Adversity, and Pain

Surveys, Registries, Interviews

Fear of Recurrence, Adversity, and Pain

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.

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PROMISE Registry: A Prostate Cancer Registry of Outcomes and Germline Mutations for Improved Survival and Treatment Effectiveness

Surveys, Registries, Interviews

PROMISE Registry: A Prostate Cancer Registry of Outcomes and Germline Mutations for Improved Survival and Treatment Effectiveness

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

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

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A Survey on Options for Managing Cancer Risk Among Women with a BRCA1 or BRCA2 Mutation

Surveys, Registries, Interviews

A Survey on Options for Managing Cancer Risk Among Women with a BRCA1 or BRCA2 Mutation

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.

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The Risk Factor Analysis of Hereditary Breast and Ovarian Cancer In Women with BRCA1, BRCA2 or PALB2 Mutations

Surveys, Registries, Interviews

The Risk Factor Analysis of Hereditary Breast and Ovarian Cancer In Women with BRCA1, BRCA2 or PALB2 Mutations

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.

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Diagnosis of Breast Cancer in Young Women - Share Your Story

Surveys, Registries, Interviews

Diagnosis of Breast Cancer in Young Women - Share Your Story

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. 

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Metastatic Prostate Cancer Project

Surveys, Registries, Interviews

Metastatic Prostate Cancer Project

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.

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The Metastatic Breast Cancer Project

Surveys, Registries, Interviews

The Metastatic Breast Cancer Project

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.
 

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Connect My Variant

Surveys, Registries, Interviews

Connect My Variant

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.

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Breast Cancer Treatment in Women with PALB2 Mutations

Surveys, Registries, Interviews

Breast Cancer Treatment in Women with PALB2 Mutations

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.

 

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Identification and Analysis of Families With Genetic Susceptibility To Cancer Registry

Surveys, Registries, Interviews

Identification and Analysis of Families With Genetic Susceptibility To Cancer Registry

 

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.

 

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Find My Variant

Surveys, Registries, Interviews

Patient-Driven Clinical Classification of Genetic VUS (Variants of Uncertain Significance)

Did your genetic testing identify a Variant of Uncertain Significance (VUS)?
Do you want more information on what this variant means for you and your family?
With your family's help you can discover more about your genetic variant.

Visit the Find My Variant website

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Research Search Tool Sponsored By:

Merck & Co., Inc.
Mike & Patti Hennessy Foundation