Research Surveys, Questionnaires and Interviews

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


COVID-19 Survey for Rare Disease Patients (National Organization for Rare Disorders)

Has the COVID-19 pandemic impacted you and your family? Our colleagues at the National Organization for Rare Disorders (NORD) is asking members of the rare disease community in the United States to contribute to a brief study on the nature and issues rare disease patients are facing due to the spread of the novel coronavirus. The survey is open until April 8.


Interview Opportunity for EG/EGE Patients

Research Connect is seeking EG/EGE patients 18 years and older to participate in a web-based interview (approximately 1 hour long) between March 11-13. The purpose of this interview is to better understand the patient journey and to provide perspective on proposed educational materials. They are offering participants a $125 incentive to participate. This opportunity is also open for patients with allergic bronchopulmonary aspergillosis. For more information, contact Shannon Coates-Layne at (760) 696-3465 (PST) or scoates@patientstudyconnect.com.


Investigating Food and Eating Concerns in Patients with Eosinophilic Gastrointestinal Disorders

Research survey for people with Eosinophilic Esophagitis (EoE), Eosinophilic Gastroenteritis (EGE), Eosinophilic Gastritis (EG) and/or Eosinophilic Colitis (EC):

Researchers at Northwestern University are conducting a study on how patients with eosinophilic gastrointestinal diseases experience food and eating, and how it may affect their day-to-day life. For details and to complete the online survey, visit: https://redcap.nubic.northwestern.edu/redcap/surveys/?s=XP37Y83M4F

 


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. This follows a similar study earlier this year – if you participated in that study, you are welcome to apply to participate in this follow up study. Qualified participants will receive a $150 Visa prepaid card for participating in a 60-90 minute telephone interview.

Click here to learn more and to find out if you qualify.


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.

Click here to learn more and to find out if you qualify.

APFED-EGE_EG_EC-Patient-handout-vF

 


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)