This page includes opportunities for research surveys, interviews, focus groups, and storytelling.
Seeking Input from Adults with Moderate to Severe Asthma
APFED is partnering with PeerView Institute for Medical Education to improve clinical care for those with asthma. To help guide this work, we are seeking 50 adults with moderate to severe asthma to take a short survey about experiences with healthcare providers for asthma treatment. Eligible participants will receive a $25 e-gift card for completing the survey. To participate, please visit this link.
Seeking Perspectives from those with EGPA
Posted November 2024
Virtue Research is looking to help understand the treatment and management of EGPA (Churg-Strauss Syndrome). They are seeking adults with EGPA receiving medical care in the US to participate in an online market research journal opportunity. Input will remain anonymous to their client and will help with future research for the unmet needs in EGPA care. If you qualify and participate in the online journal board, they ask for 10-minutes a week, spread out over 12 weeks, and you will be compensated $360 for your time. This will be paid by check in 4-6 weeks after you complete your survey (USPS). To get started, visit https://app.virtueresearch.com/#/login
Questions may be sent to Shannon Coates at shannon.coates@virtueresearch.com.
Be Counted: Strengthen Voices of Underserved Groups in Rare Disease Research
Posted November 2024
Patients and caregivers: Want to help researchers learn more about the real-life experiences of rare disease patients from diverse groups? Share your experiences in a virtual (online) survey and focus group by the Rare Diseases Clinical Research Network (RDCRN). Learn more and participate: https://rc.rarediseasesnetwork.org/surveys/?s=CH3FEXKWJRNKDDN4. Download and share the flyer.
Survey for Adults with EoE
Posted September 2024
Researchers at the Duke Clinical Research Institute are conducting interviews to evaluate a decision-support tool developed to help patients with eosinophilic esophagitis (EoE) choose among treatment options. The research team is looking to interview adults with EoE who are newly diagnosed or those who are looking to start/change treatments. The interviews are 1-hour long and conducted online over Zoom. Participants will receive compensation for completing the interview. If you are interested, please contact Alicja Mastylak at alicja.mastylak@duke.edu and leave your contact information so the research team may contact you to tell you more about the study and answer any questions you may have.
Share Your Opinion and Benefit APFED through Rare Patient Voice
Patients (14 and older) and caregivers (family, friends) of any disability, disorder, syndrome, disease or condition are provided an opportunity to voice opinions through surveys and interviews to improve medical products and services. Join the Rare Patient Voice community online and earn a $5 Dunkin Donuts, Starbucks or CVS gift card. APFED will also receive $5 for each qualified signup, which will benefit our HOPE on the Horizon Research Program. Your information is confidential, and your email/name is never shared. You may be invited to participate in surveys from time to time, where you will earn cash. Learn more and join here: American Partnership for Eosinophilic Disorders (APFED)