Patient & Caregiver Engagement Opportunity: Synovial Sarcoma

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The Sarcoma Foundation of America (SFA) partners with sarcoma researchers and industry to collaborate on ways to find more and better therapies for sarcoma patients. SFA does this to ensure that the voices of patients, survivors, caregivers, and sarcoma advocates are represented in research and therapy development. We believe that incorporating perspectives of patients and caregivers positively impacts and improves the overall drug development process.

SFA is currently working with a pharmaceutical company on a project in synovial sarcoma. In order to fully understand the patient journey, and to increase understanding and develop treatments and resources for people living with synovial sarcoma, our industry partner would like to learn about the patient experience directly from synovial sarcoma patients, survivors, and caregivers.

We are looking for people who are willing to share information about your personal experiences with diagnosis, treatment, and daily living as part of this upcoming project.

Project Details

  • The project will involve participation in a 60 minute, one-on-one web-assisted telephone interview.
  • There is also an option to complete two additional online tasks via smartphone, tablet or computer. Those tasks will take up to 30 minutes each to complete.
  • This is a talking and sharing opportunity. Each interview will incorporate flexibility and comfort – with breaks included – and participants can stop their interviews at any time.
  • Confidentiality and personal information will be respected and protected. Identifying information will not be disclosed to third parties without your clear consent.
  • Interested participants need availability to participate during September 2020.

In appreciation for your time and effort, a stipend will be provided upon completion of the entire study.

If you are interested and want to see if you qualify to participate, please click here. A representative from Cello Health, the research firm contracted by our industry partner to perform the interviews, will follow up if you qualify for the project.

If you have any questions or need additional information, please contact Lori Hoffman, SFA’s Director of Advocate Engagement and Public Policy, at lhoffman@curesarcoma.org.