Market Research: Understanding Challenges Faced by Patients and Families Impacted by Desmoid Tumor – Through the Eyes of Patients

$100 Honorarium

This market research study is being conducted by Engage Health (a health research firm) who is working with a company who is currently running a clinical trial for a potential therapy for Desmoid tumors.  The research is being done to obtain a better understanding of the challenges faced by patients and families. 

To be eligible you must be;

  • ·A person diagnosed with Desmoid Tumor(s) who is age 18 years or older OR their parent/legal guardian
  • Able to read, write and communicate in English and grant informed consent
  • Willing to complete an RSVP, and to participate in a 60-minute telephone interview, which will be conducted in English
  • *Note; priority will be given to those who are not members of the DTRF Patient Advocacy Committee in order to encourage new participants to the research process


Involvement consists of filling out the RSVP, answering a few short questions to ensure you qualify and providing times you would be available for a telephone interview. Based on this you may be eligible to participate in a 60-minute telephone interview, for which you will be paid a $100 USD honorarium once the interview is completed. No preparation is required to participate.

If you would like to participate, please:

If you would like to make other patients or families who are impacted by Desmoid Tumor aware of this research, please do so, but remember that the interviews are being conducted on a very limited basis, and participation is first come, first served.  Please respond quickly if you would like to participate as slots are filling fast- particularly for those with extra-abdominal tumors!

Thank you!