Welcome to the SISTER Study Extension!
In 2020, the GRACE (Gynecologic Research and Cancer Equity) Center launched The SISTER Study - a partnership with Black endometrial cancer survivors to provide a social support intervention for the critical unmet need of social isolation during active treatment of endometrial cancer. This research study was the first of its kind: a national comparative effectiveness trial focused on improving treatment outcomes for Black/African American women with endometrial cancer.
Now, the SISTER Study Extension will focus on the longer-term social, emotional, spiritual, and physical effects of endometrial cancer among Black women after active treatment completion. We know the story doesn't end with the last radiation treatment or chemo cycle. In many ways, it's just beginning.
With this SISTER Extension study, we hope to learn how the support you received from the SISTER Study (group or one-on-one support, or a care package) impacted different aspects of your life. This study continues to be co-created with Black women with EC to ensure we focus on what really matters.
The primary goals of the SISTER Study Extension are to:
- Understand the long-term trajectory of social isolation and loneliness for up to 5 years after EC active treatment through once-a-year surveys and tailored interviews, with special attention to the social support 'cliff' during survivorship.
- Understand physical and functional quality of life changes and treatment side effects over the long-term through formal survey data combined with electronic medical records data.
- Report the overall survival rate among Black women with high-risk EC on the SISTER Study using electronic medical record data and death certificate records.
How you can help:
By consenting and enrolling in the SISTER Study Extension, you are agreeing to take part in completing surveys, once a year, that reflect your experience with social isolation, loneliness, quality of life fear of cancer recurrence, and side effects. These once-a-year surveys can be completed on your own via a link specific to you or by speaking on the phone with a dedicated SISTER Study Extension Team member.
We will also ask your permission to request information from your medical record that is specific to your cancer treatment.
Most importantly, by continuing to collaborate with us on the SISTER Study research, you will help us tell the story of Black women's social, emotional, and physical experiences when faced with an endometrial cancer diagnosis. This is unique and invaluable information that will benefit our community through a perspective only you can provide.