What to Know About the Benefits of Sharing Your Medical Data
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