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Search Results: Surveys, Registries, & Interviews (6 results)

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Surveys, Registries, Interviews
Online survey for patients and caregivers focusing on multiple aspects of cancer

Cancer Experience Registry

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.

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Surveys, Registries, Interviews
Anyone age 18 or over can participate in this research study

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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Surveys, Registries, Interviews
Registry for 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.

Clinicaltrials.gov identifier: NCT03231891
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Surveys, Registries, Interviews
Study for people with an inherited mutation to help them talk with relatives about their family history and genetic test results, connect them to others with the same variant and to their family trees

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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Surveys, Registries, Interviews
Treatment Study to better understand breast cancer treatment among people with ATM, CHEK2 and PALB2 genetic mutations

Hereditary Breast Cancer Treatment Study (Treatment Study)

The Treatment Study is an international research study to better understand breast cancer treatment among individuals with ATM, CHEK2 and PALB2 gene mutations. 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.

 

Basser Center for BRCA: Penn Medicine
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Surveys, Registries, Interviews
Registry for people with an inherited mutation or variant of uncertain significance

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.