APFED partners with 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 independent 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?
Prior to posting opportunities such as those listed below, APFED vets them to ensure that the projects are legitimate and sound, are approved by IRB or compliance departments where applicable 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
Are you interested in participating in a health research study for eosinophilic gastritis (EG) and/or eosinophilic gastroenteritis (EGE)?
Allakos is looking for people ≥8 and ≤17 years of age with EG and/or EGE to participate in a 60-minute discussion about their symptoms and overall experience with this condition and to provide feedback on an electronic questionnaire that asks about their symptoms of EG/EGE. The interview may be conducted in-person, via telephone, or videoconference (e.g., skype). No medication will be administered as part of this discussion. Each participant will receive $150 once the discussion is completed.
To participate, you must have access to the internet and a computer, tablet, or smartphone during the discussion. If interested in participating, please:
- Call (617) 720-0001 to obtain additional information about the study and to have any questions you may have about the study answered. Please reference study number AS8038C and ask for any of the following staff members: Samantha Power, Sarah Ollis, Emily Love, Brenna Mossman, or Megan McLafferty.
- Once written consent has been provided, and eligibility for participation has been confirmed, we will arrange the next steps for the discussion.
- Note, some personal information, for example, a name, telephone number, email, and/or address may be needed to participate in this study.
The information you share may help improve EG/EGE research in the future. We will make every effort to ensure that your name and contact information remains with Adelphi Values and people directly involved with this study. Only these people will have access the information you provide as part of this study.
Interview Invitation: EoE patients who were in the past or currently on Budesonide respules (e.g. Pulmicort) & uses a compounding pharmacy to mix it.
Length: 30 minute Telephone Interview
Interview Date: Call number below for details
Study Reference #: 2019-0611
Study Toll Free #: 866-352-5346
Reference: American Partnership for Eosinophilic Disorders (APFED)
To see if you are eligible to participate, please call 866-352-5346 and reference the American Partnership for Eosinophilic Disorders (APFED). If someone is not available, please leave a call-back number. Interviews are scheduled on a first-come first-serve basis.
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)
Share Your Experience with Eosinophilic Gastroenteritis (EGE), Eosinophilic Gastritis (EG) and Eosinophilic Colitis (EC)
Market Research opportunity for people living with Eosinophilic Gastroenteritis (EGE), Eosinophilic Gastritis (EG) and Eosinophilic Colitis (EC):
IQVIA, a global healthcare research firm, is running a research study to explore patients’ experiences with EGE, EG and EC. Qualified participants will receive a $150 Visa gift card or check for participating in a 60-90 minute telephone interview.
Advisory Group for Patients with EGPA, EoE, or HES
Through AstraZeneca’s Global Patient Partnership Program (PPP), the company aims to collaborate directly with small groups of patients worldwide to listen, learn, and co-create products and solutions that deliver benefits for all patients.
Research Interview about Eosinophilic Esophagitis (EoE)
Do you have a child 2 to 10 years of age with EoE?
If so, you and your child may qualify to take part in a non-treatment research interview study asking participants about their experiences with EoE.
If eligible, you may be asked to take part in up to two interviews. You will also be asked to complete two questionnaires about your child and yourself. You may also be asked to complete a daily diary between interviews.
Eligible participants who enroll and participate will receive a total of $100 [Round 1, $100; Round 2,Visit 1 $75; Visit 2 $25)].
For more information about this study, please contact Evidera at 1-800-728-2162 or email at EoEresearchstudy@evidera.com
(US Residents Only)