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
Survey for patients or caregivers of patients with EoE
Are you a patient or caregiver of a patient with EoE ? CE Outcomes, LLC is working to help develop education and other information for people with EoE and is in need of input. If you are a United States resident 21 years of age or older, they would like to hear your perspective on the challenges you face and needs you may have in your daily experience with this disease. For your time in completing a 15-20 minute survey, they are offering a $15 Amazon.com gift card or donation back to APFED. To learn more or to participate, please visit https://bit.ly/EoEsurvey.
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 firstname.lastname@example.org.
Experiences in Accessing Mental Health Treatment
Researchers at Children’s Friend, Inc., an affiliate of Seven Hills Foundation, in Worcester, MA are studying the experiences in and barriers to accessing mental health services for families.
They will compare three groups
-caregivers of children with one or more mental health conditions,
-caregivers of children with mental health conditions and common medical conditions, and
-caregivers of children with mental health conditions and rare disease.
Caregivers include biological parents, adoptive parents, foster parents, step-parents, and kinship homes with children under the age of 18.
The survey is nationwide and open to families who live anywhere within the United States. The hope is the survey results will assist mental health providers in tailoring services to meet families’ needs.
Telephone Interview for Patients with Eosinophil-associated Disease
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
Research survey for asthma, food allergy, and GI allergy patients about impacts ofCOVID-19 impacts of COVID-19
Researchers at Eastern Michigan University are interested in learning more about how COVID-19 has impacted US families of children with asthma or food allergies, including gastrointestinal allergies. We are also collecting information from parents/caregivers of healthy children. This study involves completing an online survey. No identifying information is collected, so your answers will remain anonymous. If you are interested in learning more, please click the link below. This study has been reviewed by the Eastern Michigan University Human Subjects Review Committee. This link can also be shared – please share widely with other parents!
Learn more: https://emichpsych.co1.qualtrics.com/jfe/form/SV_dncGw4uwHGHcJi5
Online Survey for EGID Patients and Caregivers
If you are aged 18 or older and have been diagnosed with eosinophilic gastrointestinal disease (EGID), or are the caregiver of someone who has EGID, you are invited to participate in an online survey to help researchers better understand social factors that may impact the medical care and related decision-making of EGID patients. This survey is being conducted by investigators at the University of Illinois. Access the questionnaire here: http://bit.ly/3bjeN2d
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 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)