SFA has developed a large-scale survey to understand patients’ experience with their diagnosis and perspectives on their treatment journey. We want to capture the lived experience of the people affected by sarcoma and their caregivers to advance research and drive advocacy efforts on behalf of the community.
We have included the patient voice in the survey development process to ensure transparency and improve the quality of the information collected to better serve patients and their caregivers.
Sarcoma Foundation of America (SFA) created this survey to understand the patient pathways and perceptions surrounding a sarcoma journey. Our goal is to share this information with the sarcoma community to improve outcomes. While we continuously hear individual stories of sarcoma patients, this survey will help amplify these stories and bring together the broad range of lived experiences of sarcoma patients to help improve outcomes for patients with this rare cancer.
This survey is vitally important as we need to collect data for sarcoma subtypes to help advance research and effective treatments. Finally, the survey will gather data on patient experiences that can be overlayed with clinical data to add greater dimension and comprehensiveness of our understanding of the impacts of sarcoma. We hope this will help expedite the process of getting more approved and less toxic treatments available to patients.
Your participation is critical to ensuring the patient voice and experience is included in the sarcoma landscape. Moreover, our ability to look across subtypes for common experiences, potential treatments, and impacts can greatly advance our knowledge about sarcoma.
We will provide results to all participants once the data is final. Our goal is to publish this data so that it can be used as a resource to drive advancements in sarcoma. We very much appreciate your time and contribution to the sarcoma community.
Aims:
- Published data to change practices and increase resources for sarcoma patients
- Use the findings to inform SFA’s advocacy and dissemination efforts
The survey will launch later this year. If you are interested in being a part, sign up now using the form below and we will send you the survey link at launch.
