Research Surveys, Questionnaires and Interviews

Questionnaires, surveys and patient interviews are critical to understanding the patient journey with a disease.

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 therapeutic development, this publication may be helpful: http://www.sciencedirect.com/science/article/pii/S1098301516304326


GP0955D Eosinophilic Gastritis (EG) and Eosinophilic Gastroenteritis (EGE) patients in US
Posted 9/22/22

We are conducting a study in Eosinophilic Gastritis (EG) or Eosinophilic Gastritis with Eosinophilic Gastroenteritis (EG+EGE) on behalf of a pharmaceutical company sponsor. The study consists of a single 60-minute phone interview. We are looking to interview adolescents (12-17 years old) and adults that have either condition. To show our appreciation for your time, you will be compensated $125 for the interview, plus $50 for sharing a document that confirms your diagnosis from a doctor or your medical records.

Guardians will need to provide consent on behalf of adolescents and will be compensated for their efforts.

If you would like to take part in this study, please send an email to miryam@global-patients.com.

Share your experience with Eosinophilic Gastritis (EG) or Eosinophilic Gastritis with Eosinophilic Gastroenteritis (EG+EGE)

Posted 7/02/22

Background: IQVIA is a global research firm commissioned to conduct interviews with adult patients and adolescents (12-17 years of age) who have been diagnosed with Eosinophilic Gastritis (EG) or Eosinophilic Gastritis with Eosinophilic Gastroenteritis (EG+EGE). IQVIA is seeking patients to participate in a confidential one-on-one phone interview to share their experiences living with this condition.
Purpose: The purpose of the study is to explore patients’ experiences with EG or EG+EGE. Specifically, the study will focus on understanding patients’ symptoms and the impact of these symptoms on patients’ daily life. The outputs of this research study will help the sponsor, a pharmaceutical company, understand what outcomes are most relevant to patients in order to inform the development of new treatments.
Your Involvement: If you are interested, you will be asked to complete an informed consent and then will be eligible to participate in a 60-minute telephone interview with an IQVIA healthcare researcher. At no point before, during, or after the interview will you be contacted to purchase anything or be asked to take any medication. No personal identifying information will be included in the study documents and summary reports generated from this research study. In return for your voluntary participation in the interview, your time and effort will be compensated with a $125 that you will receive after completion of the phone interview.

Next Steps: If you are interested in participating in this research study, please click the following link: https://survey.cmix.com/7A7C05D5/7E302C4Q/en-US which will ask you several screening questions to confirm your eligibility. You will also be asked to provide consent to participate. Afterward, IQVIA will contact you with more information. With any questions, please contact Grecia Sanchez at grecia.sanchez@iqvia.com.

View the survey flyer.

EoE Research Survey for U.S. Participants

Posted 6/29/22

We are pleased to be partnering with the Asthma and Allergy Foundation of America (AAFA) to learn more about experiences of people living with eosinophilic esophagitis (EoE). You can help by participating in this research survey. Your insights will help us guide educational content and programmatic resources around EoE. The survey should take less than 15 minutes to complete.

Eosinophilic Esophagitis (EoE) international survey

Posted 5/19/22

Are you living with eosinophilic esophagitis (EoE)? This international survey is being conducted to understand what therapies people with EoE use to manage their symptoms. Please visit https://scuau.qualtrics.com/jfe/form/SV_a4dHX9pQy1vZVjM  to find out more about the survey.

View the survey flyer.


Eosinophilic Esophagitis (EoE) phone survey

Posted 3/15/22

Research opportunity for Eosinophilic Esophagitis (EoE) patients that are male. This is a 60 min web-assisted phone interview, and the compensation is $100.

Please sign up at the link below to receive an email invite to the survey.

https://rarepatientvoice.com/apfed/

 


Do you or your child have eosinophilic gastritis (EG) and/or eosinophilic duodenitis (EoD)?

Posted 9/21/21

A research study is seeking adolescents (12 to 17 years) and adults (18+ years) diagnosed with EG, EoD, or both EG and EoD to participate in a 90-minute interview. You will receive $150.00 for your participation.

View the flyer for details.


Seeking Teens/Families to Share Experiences About Living with Eosinophilic Esophagitis (EoE)

Posted 9/22/21

Ajinomoto Cambrooke, makers of Essential Care Jr. and EquaCare Jr. are looking for teens and families to share their stories and experiences about living with Eosinophilic Esophagitis.  Specific needs include guest blog writers.  Topics of interest: using amino acid-based formulas, bullying, following elimination diets, emotional health challenges, strategies for improving quality of life, navigating holidays. Financial compensation will be provided on a case by case basis. If interested, please email our clinical specialists at NutritionSupport@Cambrooke.com.


Validation of the Eosinophilic Gastritis & Gastroenteritis Quality of Life Scale for Adults

Posted 9/10/21

Do you have #eosinophilic gastritis (EG) or gastroenteritis (EGE)? ⁦‪ Researchers at Northwestern University have a study to develop a questionnaire to assess how EG/EGE affects your quality of life.

To participate, take an anonymous survey.


COVID Vaccine Experiences

Posted 5/28/21

Our partner Inspire surveyed tens of thousands of people about their vaccine experiences, such as post-vaccination symptoms and side effects. We invite you to explore the results through Inspire’s interactive dashboard. We also encourage you to share your own vaccine perceptions, symptoms, and access as a person affected by an eosinophilic disorder by taking the ongoing survey. https://bit.ly/3thlxqu


NUCALA Experiences

Posted 12/30/20

On behalf of GlaxoSmithKline (GSK), a patient engagement agency is seeking with empowered individuals who are currently treating a medical condition with NUCALA who are interested in speaking publicly about their experience with NUCALA and its impact on their lives. As part of this opportunity, individuals may be asked to participate in a wide variety of activities including a video shoot, internal speaking events, and/or conferences. Individuals will receive compensation for their participation in any of these activities. Please note: Individuals will go through an interview process; therefore, there is a chance that not everyone interviewed will be selected to participate. If you, or someone you know is treating with NUCALA and is interested in this unique opportunity, please call 1-888-203-9055 or email emily@mypatientstory.com.


Telephone Interview for Patients with Eosinophil-associated Disease

Posted 5/13/20
MedPanel Inc. is conducting telephone interviews with patients in the coming weeks to better understand the patient’s journey with eosinophil-associated diseases.

Patients aged 18 and older who are eligible to participate in the interview will be offered $150 for their time.

Some examples of questions that patients will be asked include:
– What was the experience like of being diagnosed with your condition?
– What kind of relationship do you have with your healthcare provider(s)? Is it a good relationship, or one you feel is lacking in certain areas?
– How has your diagnosis changed your family and/or work life, and what are some daily challenges you face?

Patient input will help ensure that the needs of the patients are met as new treatments are developed.

If you are interested in participating, please visit this webpage to help determine your eligibility: https://www.surveygizmo.com/s3/5594572/Patient-TDI-Screener

 


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)