The Global Pediatric Epilepsy Surgery registry is a research project that allows families to share their experiences with and without epilepsy surgery in childhood by completing a series of surveys. The data collected will be used to answer some of the most important questions about pediatric epilepsy surgery, such as:
- What can a child do over time after epilepsy surgery?
- What post-operative therapies and interventions are useful?
- What are some unusual symptoms or medical issues that happen after epilepsy surgery that parents report but doctors may be unaware of?
- What are the issues that concern parents?
- What is the impact of epilepsy surgery on a child’s quality of life?
- What surgical techniques work best and for whom?
The main purpose of the registry is to gather information that can be used to understand the developmental trajectory after epilepsy surgery. Researchers can then use the registry to analyze the information, look for changes in a child’s function over time, determine whether some surgical procedures are more effective at stopping seizures than others, recruit participants to their approved studies, and collect new information by adding new questions to the registry.
The information is used to:
- estimate the number of pediatric epilepsy surgeries performed each year;
- estimate seizure control rates;
- understand reasons for delay to surgical evaluation;
- understand the motor, endocrine, autonomic, cognitive, behavioral, educational, and other functional outcomes after epilepsy surgery; and,
- enhance research that could improve care and education outcomes for all children after epilepsy surgery.
Who Can Participate In The Registry?
At this time, only parents or guardians of children ages 0 – 17 who:
1) have had epilepsy surgery; or
2) have been evaluated for epilepsy surgery, but have not had it yet; or
3) have been evaluated for epilepsy surgery, but have not been found to be a candidate for surgery, or
4) have been evaluated for epilepsy surgery, but whose parents have declined surgery.
At this time the registry is in English only; however, over time, the registry will be translated to various languages. All that you need is a computer, an internet connection, and an email address to participate.
Please note: At this time, citizens of EU countries cannot participate in the registry. We are working hard to ensure that the registry is compliant with the General Data Protection Regulation. We will share via social media and our email list when the registry is GDPR compliant.
What questions will I be asked?
The following documents include all the questions you will be asked. You may download them to view the surveys prior to entering the registry. Zip drive – GPESR surveys
The registry is never used for fundraising
Why Should I Register My Child?
It is important to include as many children who have had epilepsy surgery as possible to get the most accurate information. When you register your child, you help give researchers more information. This could lead to a better understanding of how children develop after epilepsy surgery, and could help offer a better future for children who have epilepsy surgery.
How Does the Registry Work?
First you will complete a consent form, which explains the purpose of the registry, and how to enroll. Then you will fill out a questionnaire about you and your child. You may complete the consent form and questionnaire online only.
The information you provide will be stored securely and no unauthorized people will be able to gain access to any information about you. Your information will be “de-identified.” This means your data will be identified by a unique code, not by your (or your child’s) name.
You may choose to be contacted by researchers who are planning a research study. Only researchers who have been approved by their own local ethics committee and by the CIRB review boards may do this. You may decline to be contacted by researchers as well.
If you give your permission to be contacted by a researcher, they will only be given the information they need about your/your child’s disorder that will help them decide whether you/your child might be suitable for their research study. If they think you meet the criteria, they will contact the person in charge of the registry. Staff working for the registry will “decode” the data to find out your personal details and will contact you to give you information about the study. They will not give your name or any personal information to the researchers. If you are interested in the information you receive about a particular study or clinical trial, you will be given information about how you can contact the researchers running the study. If you decide to take part in the study, you will need to review and sign a separate consent form. You are completely free to make your own decision about any study or clinical trial we inform you about. If you decide not to take part in a particular study or trial, your data will still be kept in the registry and we will continue to inform you about other studies unless you tell us not to.
Help Us Spread The Word!
The more patients who participate in the registry, the more valuable the data is. If you’d like to help us recruit more parents of children who have had epilepsy surgery to participate in this patient registry, please:
SHARE this page on social media and change your profile photo using our frame;
EMAIL a link to this page to and bring it to your child’s doctors and therapists to distribute to their patients;
PRINT OUT a copy of this registry flyer and share it with your child’s medical staff (coming soon)