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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.
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.
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| Measure | Description | Time Frame |
|---|---|---|
| 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. | 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. | 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. | 10 years |
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Inclusion Criteria:
Exclusion Criteria:
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ShareForCures is open to all individuals diagnosed with breast cancer, age 18 and older, of any gender, and all racial and ethnic origins living in the United States.
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Jerome Jourquin, Ph.D., M.S. | Contact | 1-877-465-6636 | JJourquin@komen.org |
| Name | Affiliation | Role |
|---|---|---|
| Jerome Jourquin, Ph.D., M.S. | Susan G. Komen | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Susan G. Komen | Recruiting | Dallas | Texas | 75380 | United States |
Researchers may request access to SFC data, and upon approval may use the data to answer research questions including studies that will lead to new knowledge about breast cancer and advances in patient care and outcomes.
All data sharing will be handled securely and under IRB approval or exemption, following rigorous standards to protect individual privacy and data confidentiality.
Once enough data have been aggregated in ShareForCures, researchers will be able to request access to ShareForCures deidentified data. Data will be available for the duration of the study.
Researchers will be required to formally request access to the data. All requests will be reviewed according to Komen's Data Request Review Process. Researchers will also need to execute a Data Transfer and Use Agreement (DTUA), comply with the Researcher Code of Conduct, and abide by other Komen policies and procedures, as needed.
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| ID | Term |
|---|---|
| D001943 | Breast Neoplasms |
| ID | Term |
|---|---|
| D009371 | Neoplasms by Site |
| D009369 | Neoplasms |
| D001941 | Breast Diseases |
| D012871 | Skin Diseases |
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ShareForCures plans to leverage different types of biospecimens, including breast cancer tissue (retrospective), blood (retrospective and prospective), and saliva (prospective).
| D017437 |
| Skin and Connective Tissue Diseases |