About EGID Partners
Thank you for your interest in learning more about EGID Partners.
EGID Partners is an online cohort of patients with eosinophilic gastrointestinal diseases (EGIDs) brought to you in a collaboration between Patient Advocacy Groups and Researchers. The goal is to advance research of EGIDs like eosinophilic esophagitis (EoE), eosinophilic gastritis (EG), eosinophilic gastroenteritis (EGE), and/or eosinophilic colitis (EC).
More than just a one-time registry or a way to learn about new research opportunities, EGID Partners is an online group of patients who have been diagnosed with one or more EGIDs. It is a way to conduct clinical research through surveys, and in the future we hope that it will become a patient-powered research network. This means that patients like you can become “citizen scientists” through participating and proposing questions about living with the EGIDs.
EGID Partners is a way for you and other EGID patients to have the opportunity to provide information, ask the questions that are important to you, and help guide the research process. People without EGIDs are also encouraged to join EGID Partners to provide information as well, so comparisons may be made between those who do and don’t have these conditions.
We encourage you to join this research community today and help researchers answer the questions that matter most to you! Please share this opportunity with others, including those who do not have EGID, and encourage them to get involved in this collaborative effort too!
Here’s how you can help:
You can join EGID Partners if:
- You are 18 years of age or older and have been diagnosed with an EGID
- You are 18 years of age or older and you are the parent or caregiver of a child (under 18) who has been diagnosed with an EGID
- You are 18 years of age or older and do not have an EGID, but want to provide information so that we can make comparisons between people with and without EGIDs
- You are 18 years of age or older and you are the parent or caregiver of a child (under 18) who does not have an EGID, but you want to provide information about your child so that we can make comparisons between people with and without EGIDs
If you chose to become an EGID Partners member, we’ll ask you to complete an initial survey to learn more about your health. You will never have to answer survey questions you don’t feel comfortable answering. After completing the first survey, we will contact you two times per year by email and ask you to take an updated survey. We may at times notify you about other studies you qualify for. You don’t have to join these studies – it’s completely up to you.
Completing the confidential initial survey should only take about 30 minutes. The survey is implemented by the University of North Carolina at Chapel Hill (UNC) School of Medicine. Your information will be kept completely confidential on UNC’s secure servers. For details about how we will protect your information, please see our Privacy Policy and Data Security Measures. EGID Partners is a research effort, not a fund-raising effort. We will never ask you for monetary contributions, and we will never sell or distribute your personal information.
We believe this project has great potential to improve the lives of individuals with EGIDs. Please partner with us to understand EGIDs better than ever before. Please don’t underestimate your contributions. You really can make a difference. If you are ready to join, click here .