FAQ

What is the study team trying to learn?

The study team is interested in learning more about children’s abilities and quality of life a year after they leave the pediatric intensive care unit.

What benefit is there for my child to be in this study?

Answering our survey will not benefit you directly. We hope what we learn will help other people in the future.

Is this study only while my child is in the hospital?

We will be following up with you for one year after your child leaves the PICU. There will be 4 follow-up surveys to complete. The follow-up will take place over the phone and online using surveys at 1 month, 3 months, 6 months, and 12 months after they leave the PICU to check on how your child is doing. You will not have to come back to the hospital for this part of the study.

What happens when my child is discharged from the PICU/hospital?

We will be following up with you for one year after your child leaves leave the PICU. We will contact you 2 weeks after your child is released from the PICU to confirm that your contact information is correct.

There are then 4 follow-up surveys. The follow-up will take place over the phone and online via surveys at 1 month, 3 months, 6 months, and 12 months after they leave the PICU to check on how your child is doing. You will not have to come back to the hospital.

What if I don’t have internet access at home?

We can help you to complete the study follow-up surveys over the phone. If you have email, you can complete the surveys anywhere that you can access email.

How long will I be in this study?

For the time that your child is in the hospital and one year after.

How is this study different than normal care my child would receive?

There is no difference. Your child will receive normal care for their condition.

What if we move?

If you move, we ask that you please contact the ASCEND study team at ascend-study@umich.edu or 734-845-5035 to let them know your new address and contact information.

Will I receive any results when this study is over?

The study results that are published will be about the group of subjects in the study, not individual subjects.

Who pays for this study?

The study is paid for by the National Institutes of Health, National Heart Lung Blood Institute (NIH-NHLBI), funded by the Department of Health and Human Services (DHHS).

Do I have to pay for the study?

No.

Will you charge my insurance for this study?

No.

Do I have to pay anything to be in this study after my child leaves the hospital?

No.

Do I get paid for being in this study?

If you complete all of the surveys, you will receive a total of $50 in gift cards. 

Is this study risky for my child?

There is minimal risk for participating in this study. 

Will the people who care for my child be upset if I don’t participate?

No, you do not have to participate, and no one will be upset if you choose not to.

Will any study procedures be painful?

No.

Who should I call first if I change my mind?

Call the ASCEND study team at 1-734-855-5053 and the study team will immediately contact your study lead at your hospital.

Why was my child selected for this study?

Your child was selected because they are the right age and have the type of illness in their lungs that we are studying and are on ECMO to help with their illness. Your child’s doctor believes that they will be a good candidate.

What if I change my mind?

You can change your mind and stop being in the study at any time. Please tell your child’s doctor/care team or call the study team at 734-845-5053.

What information about my child does the study keep?

The study keeps your child’s medical information, like dates, the name of your child’s illness, and medication your child receives.

Will anyone know that my child was in this study?

Only you, your child, your child’s study team in the hospital, and the study team at the University of Michigan will know that your child was in this study.

Is my information kept private?

Your information will not be shared with anyone outside of the study.

If you have any questions about ASCEND, please contact the study team by email or phone.

ASCEND study team:

Thank you for being part of ASCEND!