This page includes opportunities for research surveys, interviews, focus groups, and storytelling.
WebMD Seeking to Interview Someone Living with EoE
A journalist for WebMD is working on a story to showcase perspectives of a person living with EoE. The story will also include a photo of the person.
The ideal candidate is someone who wants to share insights about living with EoE and motivate and encourage others who have the condition. There is a preference for a male in or near his 40s. The writer will arrange a 30-minute telephone interview by Friday, June 9. Those interested may contact Sonya Collins at (678) 710-5144 or email@example.com.
Seeking with Severe Asthma for a US Patient Advisory Board
The Center for Information and Study on Clinical Research Participation (CISCRP), an independent non-profit organization, together with a pharmaceutical company, is planning a virtual patient advisory board among individuals (18-70 years old) diagnosed with severe asthma. This virtual patient advisory board will provide an opportunity for those with severe asthma to share their experiences living with this condition, their views on what they would like an ideal treatment to address, what outcomes would be most meaningful, as well as share thoughts on a proposed clinical trial for this condition. The goal of the advisory board is not to recruit for a clinical trial, but rather to learn from patients how to best create a clinical trial that addresses the unique needs of individuals with this condition.
This virtual patient advisory board would take place in May 2023 (exact date/time TBD). The meeting will be conducted virtually using an online platform (Zoom) as 2, 2-hour meetings. As a thank you for your time, CISCRP will provide an honorarium to those who are eligible and participate.
If you are interested in participating in this opportunity or have any additional questions, please contact Kaitlin Gossart at firstname.lastname@example.org.
Seeking People with Eosinophilic Esophagitis (EoE) to Share their Story
Bristol Myers Squibb™ (BMS) invites members of our community to share their story through their Share to Inspire platform. This platform gives people an opportunity to share their experiences with health conditions or with BMS’s treatment medicines and designed for patients and caregivers to pass on what they’ve learned to others.
Adults with FPIES
Note: While this page intended to display opportunities for those with eosinophil-associated disease, we occasionally post opportunities from research collaborators where there may be overlaps with patient populations.
Researchers from the Division of Allergy at the University of Rochester, Hassenfeld Children’s Hospital at NYU Langone, Texas Children Hospital, Boston Children’s Hospital and Children’s Hospital of Philadelphia, in collaboration with International FPIES Association (I-FPIES, fpies.org), invite you to complete an online questionnaire to better characterize the experience of adults with FPIES. Your answers will help the medical community to better understand your experience with adult FPIES and other adults affected by this disease. If you are interested in participating in this study, please answer the interactive questionnaire. There is an information letter that describes the study in more detail once you start the survey.
Seeking Eosinophilic Esophagitis (EoE) Patients Interested in Dietary Therapy
Have you been diagnosed with Eosinophilic Esophagitis (EoE)? Interested in dietary therapy for your EoE and don’t know where to start? Worried that an elimination diet will be difficult to follow?
We developed a dietitian-led video series to help you learn about the cause of EoE, how certain foods are involved, and how to work through the stages of the 4-food elimination diet while maintaining a nutritious and enjoyable diet. This course normally costs $100, but will be FREE to you and we hope you can give us feedback as part of this study.
Through living with conditions and/or engaging with health and social services patients, patients become experts by experience. By involving patients in decisions about their health and care, clinicians can improve health and wellbeing, improve the quality of care, and ensure people make informed use of available healthcare resources. Therefore the patient journey is an integral part of EGPA management.
Iridium Continuing Education is looking for an EGPA patient to share their perspective on the diagnosis and management from their first symptom through the continuum of care. This patient will share their experience in a patient journey video, aiming to bring awareness of the patient journey to clinicians. This educational activity is supported by an educational grant from GSK. An honorarium will be provided to the patient selected. Please contact email@example.com if you are interested in sharing your story.
Eosinophilic Esophagitis (EoE) patients in the US
Kx Advisors, a healthcare strategy consulting firm based in Washington D.C., is seeking adults (18+) with eosinophilic esophagitis (EoE) living in the U.S. for a study on patients’ experiences with EoE symptoms, diagnosis and treatment. The purpose of this study is to help our client, a pharmaceutical company, understand the patient pathway and currently available treatment options for EoE.
Those who are interested will be asked to answer a short series of questions confirming their eligibility for the study, and will then participate in a 60-minute web-assisted phone interview with a Kx consultant. In return for your participation in the interview, you will be compensated $100, which you will receive after the completion of the interview.
If you are interested in participating, please contact Hanna Gimse at firstname.lastname@example.org
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)