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
Patient Input Needed for Eosinophilic Esophagitis (EoE) Research
Have you ever been diagnosed by a Physician as having Eosinophilic Esophagitis, or EoE? Are you between 18 and 26 years old? If so, you may be eligible for an important new research study! If you think you may be eligible for this research, please visit http://myeoetransition.com for instructions on how to get started.
Get Paid for Your Opinion and Benefit APFED at the Same Time
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.
There is currently a need for EGPA patients to participate in January 2019 activities. Learn more and apply at AZPatientPartners.com.
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)