Search Results: Surveys, Registries, & Interviews (29 results)

This goal of this study is to interview Latinas, who have been diagnosed with BRCA1 or BRCA2 mutation, and explore their experience with genetic testing

This study explores how different levels of support systems influence coping strategies among LGBTQIA+ cancer patients, specifically patients who are over the age of 18, actively diagnosed with cancer, and reside in the United States.

FORCE is conducting a short survey to better understand the unmet needs of people who are at high risk for colorectal, pancreatic or prostate cancer. You can take the survey here. 

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.

This research registry will collect and save data, cancer samples and family health history information to discover new ways cancer develops. It will look to find new genes that could be used for treatments and preventing cancer for people with hereditary cancer.

Today, researchers are learning about breast cancer from a small subset of patients, who are not representative of all breast cancer patients. ShareForCures® is an online registry that offers people who have been diagnosed with breast cancer a way to participate in research by connecting information about themselves with their breast cancer diagnosis, medical records, genomics. Participation is open to anyone adult, living in the United States, and who has been diagnosed with breast cancer.

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.

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.

Roadmap to Parenthood is a remote, survey-based study. Eligible participants must be aged 18-45, assigned female at birth, and history of a cancer diagnosis.

We're looking into how families share information among Caribbean individuals who have a genetic mutation linked to an increased risk of cancer. The goal is to understand the experiences of Caribbean people dealing with a higher chance of developing cancer. This study will help us figure out how genetic counselors can better support Caribbean patients and their family members in handling this genetic information. If you're interested, you can participate by filling out a survey. If you're eligible, we might reach out to you for a 45-60 minute interview. 

The goal of this study is to identify whether Li-Fraumini syndrome (LFS), which has a high lifetime cancer risk, has any other causes besides the TP53 mutation.

The purpose of this research is to study and understand the genetic and molecular causes of breast and prostate cancer in people with African ancestry.

Screening study for women at risk for breast cancer due to an inherited mutation or other risk factor

This study aims to understand the different goals and motivations individuals with an inherited gene mutation have when talking about their genetic cancer risk with family members in a conversation.

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. 

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

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. 

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 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.

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.

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.

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.

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.

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 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.
 

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.

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.

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.