Sharing your medical history and personal experience of living with MBC could lead to new treatments and better design of clinical trials. In addition to participating in a clinical trial, sharing your data by joining a registry is another way to contribute to research and often requires no visits to the study site. A registry may collect your information (often anonymously) from surveys, by sharing your medical records, and/or by providing tumor, blood, or other samples. You can withdraw your participation in a registry at any time. Many registries for people with MBC are operated through partnerships with well-known advocacy groups.
Visit the links below to learn more about registries and how they protect your privacy.
Benefits of Data Sharing and How to Share Your Data
- SAS: Sharing data from clinical trials can lead to collaborations between companies and between patients and can ensure that the data are used to answer multiple research questions
- Project Data Sphere (article and video): Project Data Sphere aims to collect and combine de-identified clinical trial data so that scientists can answer more research questions
- Time Magazine: Patients describe their experience sharing their data
Protecting Your Privacy
- National Institutes of Health: The Privacy Rule is part of HIPAA and protects your personal health information from being shared when it shouldn’t be
Ways to Share Your Data
- Metastatic Trial Search: Trials for Surveys/Interviews/Registries
- Cancer Support Community: CSC Cancer Experience Registry
- Count Me In: The Metastatic Breast Cancer Project
- Susan G. Komen: ShareForCures
Last Modified on December 2, 2024