Last month, we highlighted the benefits of joining a registry and discussed how your personal information is protected. If you joined a registry in the past or are considering joining, you may be interested in learning the type of results that registry studies can produce.
Click the links below to learn about completed or ongoing registries that are providing results for people living with MBC and for ways to share your information.
AURORA
Collateral Damage Study
- METAvivor: The Collateral Damage study was undertaken to understand the impacts of living with MBC on quality of life
- Dr. Susan Love’s MBC Collateral Damage Study (journal article): This study found that people living with MBC experience collateral damage—psychological, social, work-related, financial, and functional aspects of living with the disease—and that supportive care programs are needed to improve quality of life
NCI Exceptional Responders Study
- Journal article: This study found changes in tumor DNA that were associated with an unusually long-lasting response to treatment in two people with triple-negative MBC and two with HER2-positive MBC
- Journal article: Analysis of tumor DNA from patients with exceptional responses, including 10 with MBC, found changes in the DNA that may explain these unexpected responses to approved and experimental treatments
- National Cancer Institute: This article explains the purpose and status of this study
Dr. Mark Burkard’s Exceptional Survivors Study
- OncLive: Dr. Mark Burkard explains the reasons for initiating the Exceptional Survivors study
- University of Wisconsin: Preliminary results of the Exceptional Survivors study are presented
Ongoing 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 January 2, 2025