ShareForCures: Susan G. Komen's People-powered, Data-driven Breast Cancer Research Registry
Summary
ShareForCures (SFC) is a community-based participatory research registry, and its prime objective is to engage participants representative of the United States breast cancer patient population -including minoritized and historically marginalized people, persons, or communities-to ensure the data researchers use to study breast cancer is as diverse as the people touched by this disease. In doing so, researchers will have a better understanding of breast cancer, and everyone can potentially benefit from scientific advances and improvements in care.
Detailed description
ShareForCures (SFC) will be a people-powered, data-driven breast cancer registry that will provide a way for individuals from diverse backgrounds to participate in research and enable participants' data to be used for breast cancer research. The overarching goal of SFC is to create a robust research resource comprised of clinical, biological, socio-behavioral, and other data from up to 200,000 people with breast cancer-including minoritized and historically marginalized people, persons, or communities-to ensure the data, researchers use to study breast cancer, is as diverse as the people touched by this disease. In doing so, researchers will have a better understanding of breast cancer and everyone can potentially benefit from scientific advances and improvements in care.
Outcome measures
Primary
Engage participants representative of the United States breast cancer patient population in ShareForCures.
Enroll and engage up to 200,000 people, who have been diagnosed with breast cancer, reflecting the diversity of breast cancer survivors within the United States, to participate in the registry as our partners in research.
Time frame: 10 years
Integrate participant data into ShareForCures.
Collect and curate a rich scope of participant data from a variety of sources (including participant-provided information, clinical records, and linkage to other existing datasets) and biospecimens to create a comprehensive, longitudinal database.
Time frame: 10 years
Facilitate scientific research using ShareForCures data.
Make deidentified data available to researchers for scientific discoveries, including research that may lead to new knowledge about breast cancer and advances in patient care and outcomes.
Time frame: 10 years
Eligibility criteria
Study locations (1)
Susan G. Komen
Dallas, Texas, 75380