Metastatic Breast Cancer Patient Input Regarding Clinical Trial Endpoints:
Update on Research Advocacy Network Survey
Endpoints for clinical trials studying metastatic breast cancer (MBC), in particular the patient perspective, has been the subject of much discussion in recent years.
In 2017, the Research Advocacy Network (RAN) conducted focus groups with patients with MBC and an online session with MBC advocates to gather their input. Subsequently, RAN conducted a survey meant to quantify patient perspectives. The focus was on gathering MBC patient viewpoints on the meaningfulness of concepts in clinical trial endpoints and to explore patient knowledge of language related to trial endpoints.
MBCA was a critical partner in this research as the member organizations disseminated the survey link. The goal of 500 responses was received in one day, indicating a high interest in the topic.
With the research completed and the data analyzed, RAN is eager to share the information with the MBCA. RAN’s partner in this work, Carol White, will present the research results, including:
- How endpoint concepts were considered, described, and tested
- Use of a cutting-edge research technique that allowed patients with MBC to convey what was most important to them
- Results for the total sample and key subgroups in terms of the importance of treatment information
- Familiarity with endpoint language
In addition, the research team (Elda Railey, Mary Lou Smith, Carol White) will discuss a summary and implications. They are eager to hear MBCA reactions and thoughts in the interest of ensuring that this important information is used to inform trial design and communication.