Doctors just don’t know enough about the long term issues faced by those who are born with Ea and TEF. This is why this survey was created. The first ever world survey: Characteristics and long term outcomes in patients with EA-TEF and TOF-OA.
With the long term issues faced by those who are born this way being so uncertain, please share this survey with ANYONE. Even those not affected can forward this to help children and adults survive. The survey will provide vital information for doctors worldwide to help them treat our babies and help them survive.
So please share this and get your friends to share it too. I don’t want my son or anyone else’s son or daughter to die as a result of doctors just not knowing how to treat them.
Characteristics and long term outcomes in patients with EA-TEF and TOF-OA
First Ever World Survey
Survey link in blue
You can copy and paste this link into your browser.
Thank you for your interest. This is an IRB approved study & will look at characteristics and long term outcomes of patients with esophageal atresia (EA).
If you choose to participate, you will be asked some questions about your disease and treatment.
Do I have to complete the survey?
Participation is voluntary, meaning you can opt out, but we hope to use the information to help improve care for patients with esophageal atresia.
Who can take the survey?
This survey is for patients of all ages with esophageal atresia AND parents/caregivers of patients with the condition too. If you are younger than 18 years, please fill this survey with a parent or guardian.
How long does the survey take?
This survey should take no more than 20 minutes. You can stop at any time and continue where you left-off at a more convenient time for you.
Do I have to answer all the questions?
All questions are optional. If any question makes you uncomfortable or you don’t want to answer, you can skip it.
Is the information safe?
The information you provide is completely confidential. We will not share your information without your permission. You will not be contacted by any member of the research team.
How will my information be used?
The information you give us will be studied by our research team. It will be used to improve healthcare delivery to patients with esophageal atresia.
If you have any further questions regarding your rights as research participants, please contact the University of North Carolina Institutional Review Board email:- [email protected], phone: 919-966-3113
If you have any study related questions please contact the Research Team (phone: 919-966-2511).
Thank you for helping us. We believe this project has excellent potential to improve healthcare for all sufferers of the condition.
Evan Dellon, MD, MPH
Survey link Below
NO Personal Data is asked for.
This survey is run by;
Center for Esophageal Diseases and Swallowing
The study is being conducted at UNC, and has been IRB-approved by UNC. Dr. Evan Dellon is the PI. No personal identifying information is collected. Any patient with EA/TEF. or TOF/OA or caregiver of a patient with Both is eligible to participate in the study by clicking on the survey link. The survey link can be shared without additional IRB or ethics agency approvals.
TOF-OA and EA/TEF are two names for the same condition. TOF-OA as it is more commonly known as in the UK and EA/TEF in the USA
Leave a Comment