APFED partners with many researchers around the globe and with pharmaceutical companies that are working to bring new therapies to the patients who need them. Patient interviews/surveys are a critical step in the process, and it is common for third party services to be used to conduct the interviews to collect unbiased answers. Examples of questions that are typically asked are to help document the patients journey with a disease: How did symptoms present? How was it diagnosed? How is daily life impacted? What are challenges of living with the disease? What does an ideal treatment look like?
Interview opportunities for research that are posted here are reviewed by an Internal Review Board, and a fundamental underpinning of such questionnaires is patient confidentiality. The de-identified information is then shared with the research partner who in turn evaluates their research plan/potential therapy to ensure it meets the needs of the patients. Any personal information collected during the process is confidential and is not shared without express consent. During the interview process, the participants may opt in or out of receiving communications about related clinical trials that are enrolling. Prior to posting opportunities like this, APFED vets them to ensure that the projects are legitimate and sound, are approved by IRB or compliance departments to ensure best practices are met, and are relevant to our patient community.
For more insight into patient involvement in pharmaceutical development, this publication may be helpful: http://www.sciencedirect.com/science/article/pii/S1098301516304326
Share Your Experience with Eosinophilic Esophagitis (EoE)
Market Research opportunity for people living with eosinophilic esophagitis (EoE):
IQVIA, a global healthcare research firm, is running a research study to explore patients’ experiences with eosinophilic esophagitis (EoE). Qualified participants will receive a $150 Visa gift card or check for participating in a 60-90 minute telephone interview.
The following opportunity is available to patients with Eosinophilic Colitis and Eosinophilic Gastritis:
The Rare Diseases Clinical Research Network (RDCRN) wants to learn more about your experience with your rare disease. They are seeking your input to help design messages that you feel are more reflective of your experience. Learning more about you and your story will help the RDCRN understand how they can better help patients just like you.
They are seeking participants in two areas: virtual (online) focus groups and virtual (online) individual interviews that will be conducted from the comfort of your own home or other desired location. You are free to participate in one or both of these opportunities.
There is no cost to you to participate! The RDCRN wants to hear more about your experience, and as compensation for your time, you will receive a $10 Amazon gift card (via a digital link sent to your e-mail address) upon the completion of your focus group or interview. If you complete both a focus group and an interview, you will receive two (2) $10 Amazon gift cards.
If you are interested in participating, e-mail the RDCRN directly at PRISM@epi.usf.edu with “Interested in Interview and/or Focus Group” typed in the subject line.
If you have any questions, please e-mail the RDCRN directly at PRISM@epi.usf.edu and type “Focus Group Question” or “Interview Question” in the subject line.
The RDCRN hopes to hear more about you and your journey!
The Staff at the Rare Diseases Clinical Research Network (RDCRN)