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
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
Research survey for rare disease patients and their families about impacts of COVID-19
Rare disease patients or their caregivers are invited to complete a 20-minute online survey from home about the ways the novel coronavirus pandemic is impacting people with rare diseases and their families. Impacts can be related to physical health, emotional health, availability of supplies, access to care, or other problems. Your responses may help researchers understand the impacts of COVID-19 on the rare disease community.
The Rare Diseases Clinical Research Network (RDCRN) is conducting this study. The network is funded by the National Institutes of Health. It includes 23 research teams working to advance diagnosis and treatment of groups of rare diseases.
APFED partners with RDCRN through its work with the Consortium of Eosinophilic Gastrointestinal Disease Research.
To complete the survey or learn more, visit the study page here. Questions? Email the study team at firstname.lastname@example.org.
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 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.
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)