Title of the Study: Dissemination and Implementation in Rare Cancer Community:
PCORI Pilot Work Shared Across Rare Disease Populations
Research Participants Invited!!!!!
Who is inviting your participation in this study?
The UAMS DFSP Research Partnership is inviting you to participate in an online questionnaire. The community research partnership includes patients living with or surviving Dermatofibrosarcoma protuberans (DFSP) and their families, the Sarcoma Foundation of America (SFA), providers and investigators from the University of Arkansas for Medical Sciences (UAMS). Funding sponsorship came from the Patient Centered Outcome Research Institute (PCORI). The questions in the survey were developed by the community research partnership.
What is the study purpose?
To measure perceived social and medical burdens of patients or adults who care for individuals with DFSP AND to gather information about patient outcomes and help increase medical knowledge about DFSP.
You can participate in this research study if:
- You are either a patient or an adult who is caring for someone with DFSP
- You have internet access
- You can read and understand English
- You are at least 18 years of age
What will you do?
Between the study’s open/close dates of October 30th, 2015 and November 20th, 2015 you can follow this link: https://outsidesurvey.uams.edu/index.php?sid=76595&lang=en to enroll and participate. You will complete an online survey with approximately 110 questions regarding your DFSP diagnosis and treatment experience, events, and any burdens you have experienced relating to your DFSP. You can choose to complete the session in one visit, or store your responses and complete over several visits- within the open/close dates.
Benefits & Risks
We intend for persons living with or surviving DFSP to benefit from advancing knowledge about this rare condition. We believe risks are minimal. Your responses will be analyzed without personal identification information. Email addresses attached to responses will be removed and not linked back to original source. The only risk in your participation is that questions may trigger unpleasant emotional responses. You may discontinue participation at any time.
Who can you contact for questions?
If you want to volunteer or for more information, please contact: Dr. Pam Williams, Principal Investigator, UAMS, firstname.lastname@example.org or Leah Fisher, Research Assistant, UAMS, 501-686-8069, email@example.com