Patient Registry

Patient Registry2019-10-09T13:31:10+00:00

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?
REGISTER YOUR CHILD HERE

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)

Frequently Asked Questions

What is a patient registry?2019-02-22T01:47:58+00:00

A patient registry is a collection of information about a group of patients who share a condition or experience. Patient registries allow doctors, researchers, and other professionals to learn from the real world experience of patients. Having uniform patient data allows researchers to combine input from hundreds or thousands of people. This helps researchers begin to see symptoms, outcomes, and patterns that might not otherwise be obvious.

Patient registries can be created by researchers or by patients themselves through patient support or advocacy organizations – these are called patient-powered registries. In patient-powered registries, patients and family members “power” the registry by managing or controlling the collection of the data and information, the research agenda for the data, and/or the translation and dissemination of the research from the data.

Why is a patient registry important?2019-02-22T01:27:29+00:00

Prior to having a patient-powered registry, we learned about the developmental outcomes after childhood epilepsy surgery through stories and anecdotes shared in social media groups, electronic mailing lists, in person from other parents, or from research studies mostly based on the experience of a single surgical facility. Although helpful, this information is not consolidated in a single area, is not tracked over time, and can be biased.

Today, The Brain Recovery Project: Childhood Epilepsy Surgery Foundation gives families a platform to share their stories in a structured, meaningful way. This benefits our community in the long term by creating a ‘research-ready’ collection of data to report back to other parents, neurosurgeons, neurologists, and other aligned professionals like physical therapists and educators who care about the benefits and challenges after epilepsy surgery.

By answering questions about your child, you can help researchers find answers to important questions, such as: How many children walk after surgery? How many children require special education? Is learning to read a challenge after all epilepsy surgeries, or just some? Is early puberty after surgery common? Do behaviors improve after surgery? What percentage of children are able to transition into adulthood and find gainful employment, or live independently?

Your participation may also help to identify common challenges that our children experience after surgery, which have not previously been identified, or which may have been dismissed by doctors.

Why should I join the registry?2019-02-11T19:45:53+00:00

The main purpose of the Global Pediatric Epilepsy Surgery Registry (GPESR) is to collect and analyze epilepsy surgery patient data to enhance the understanding of long-term outcomes of epilepsy surgery. The Registry will also help connect Registry participants with research studies for which they may be eligible.

The GPESR will advance pediatric epilepsy surgery research faster than ever before. The Registry will:

  • Provide a convenient, online platform for patients and their families to share their experiences with pediatric epilepsy surgery;
  • Describe the pediatric epilepsy surgery population as a whole in ways that have never been done before, focusing on both personal patient/family stories and more traditional clinical outcomes;
  • Accelerate and facilitate the planning research studies by helping researchers to locate potential research participants quickly and efficiently as well as generate hypotheses for future studies;
  • Assist the pediatric epilepsy surgery clinical community with the development of recommendations and standards of care;
  • Be a resource to be used by researchers who seek to study all aspects of pediatric epilepsy surgery, underlying causes, evaluation of long term motor, sensory, behavioral, cognitive, educational, and psycho-social outcomes;
  • Assist with the development of patient-centered outcomes to be used in future research studies; and
  • Allow The Brain Recovery Project to provide epilepsy surgery patients and their families with regular feedback on the Registry which will translate to real-time educational and advocacy opportunities and improve experiences and outcomes of epilepsy surgery families in the future.
How long will it take to fill out the Registry?2019-02-11T19:51:24+00:00

The initial registration and surveys will take approximately 30-45 minutes to complete. Entry of information into the Registry does not have to be finished in one sitting – the data entered will be stored and can be completed at a later time, although we encourage you to complete the process as soon as you can. We know that your time in very valuable and we appreciate your willingness to provide information so that the full spectrum of pediatric epilepsy surgery experiences and outcomes can be determined.

Where can I get additional information?2019-02-11T19:52:18+00:00

If you have any questions about the Registry, please contact Monika Jones, Principal Investigator, at registry@brainrecoveryproject.org .

I want to be involved in epilepsy surgery research studies. How will I be contacted?2019-02-11T19:50:01+00:00

This Registry will help match participants with potential research studies. If your profile matches the needs of an upcoming research study and you indicated that you would like to be contacted on the consent form, you will be notified of the opportunity to participate and will be provided with the contact information for the study coordinator. You will have the option to follow up with the study coordinator and determine if the study is the right fit for you.

Who will be able to access my information?2019-02-22T14:52:09+00:00

The Brain Recovery Project will take the information that you provide, make it anonymous (de-identified) and summarize it along with data from other Registry participants. These summaries will be made available to Registry participants, doctors, and researchers. With your permission only , The Brain Recovery Project may share your data with investigators and institutions conducting research studies.

What medical records will I need to have ready before I fill out the surveys?2019-02-11T19:48:05+00:00

Most of the Registry survey questions can be answered from the caregiver’s personal knowledge and memory, but you can refer medical and educational reports such as surgical and neuropsychological reports and IEP documents to refresh your recollection.

Is my information secure?2019-02-22T01:37:53+00:00

The GPESR is a secure platform, compliant with:

  • US Health Information Privacy Laws (HIPPA, HITECH, and FISMA)
  • FDA regulations on electronic records (21CFR Part 11)

The GPESR guidelines and procedures has been reviewed and approved by an independent Institutional Review Board (IRB). The purpose of the IRB is to ensure that human subject research is conducted in accordance with all federal, institutional, and ethical guidelines.

Principal Investigator

Monika Jones, Esq.
Monika Jones, Esq.Principal Investigator
Ms. Jones is the Visionary Founder of The Brain Recovery Project: Childhood Epilepsy Surgery Foundation. Her son, Henry, has had a total anatomical hemispherectomy to stop drug-resistant seizures, including infantile spasms, caused by hemimegalencephaly.

Registry Advisory Board

The Registry Advisory Board ensures proper evaluation of protocols to use Registry data and/or contact Registry participants. Board members are selected based on high standards of excellence across the following dimensions: research expertise, demographics, and childhood drug-resistant epilepsy community advocacy.

Solomon L. Moshe, MD
Solomon L. Moshe, MDChief, Pediatric Neurology, Children's Hospital at Montfiore
Dr. Moshé’s research has focused on translational approaches to understand the mechanisms underlying the development of epilepsy and its consequences in infants and children.
Aria Fallah, MD, MS
Aria Fallah, MD, MSDirector of Pediatric Neurosurgery, UCLA Mattel Children's Hospital
Dr. Fallah is a principal investigator of the Hemispherectomy Outcomes Predictor Scale, a multi-center study to create and validate a prediction tool for children undergoing a curative hemispherectomy for medically intractable epilepsy.
Lynn Paul, PhD
Lynn Paul, PhDDirector, Caltech Psychological Assessment for Research Lab
Dr. Paul is a clinical neuropsychologist. She also serves on The Brain Recovery Project’s Scientific Advisory Board.
Cynthia Menard, MD, FDCPC
Cynthia Menard, MD, FDCPCClinical Cancer. Research Unit, Princess Margaret Cancer Centre
Dr. Menard is the parent of a child who required epilepsy surgery to stop seizures. She serves on the registry advisory board as a parent/patient advocate member.

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