Families with genetic epilepsies need better treatments today - new medicines, new ideas, new outcomes.
Families need answers to their most pressing questions - What does the future hold? What can I do to get better?
Researchers around the world are working to answer these questions, but they need partnerships with families like yours.
Some genes are so rare that only a few families around the world have epilepsy with that gene, and to make discoveries researchers need to join together with each of those families so the true nature of the genes--and what will cure these epilepsies--can be understood. It is only with participation by families like yours that researchers can develop new medicines and understand the variation in how the gene is causing epilepsy.
The Global Genetic Epilepsy Registry is a collaboration among researchers and patients from around the world to address precisely this problem.
Our goal is to build partnerships among researchers and families. By linking a person or family with epilepsy caused by a particular gene with a researcher, possibly on the other side of the world, who is studying that gene, we envision patient-scientist research teams that will enable the genetic causes of epilepsy to be more quickly understood, bringing treatments and possibly cures to more people with epilepsy.
If you or a loved one has epilepsy with a known genetic cause, you are a critical part of this effort and we invite you to join us.
Why should my family participate in the registry?
- To partner with researchers interested in rare genetic forms of epilepsies and to understand them better.
- To develop studies of rare genetic epilepsies to find better treatment options.
- To get up to date information on rare genetic forms of epilepsy.
- To be informed about new research projects that could benefit families with epilepsy.
How it works
- Any person with epilepsy that has a genetic cause can enroll in the Registry.
- To enroll, you only need to answer a short survey that takes less than five minutes.
- Once enrolled, you will receive a quarterly newsletter describing new studies, patient organizations, and other news.
- You can cancel the newsletter or withdraw from the Registry at any time by clicking here.
- As research projects emerge, the Registry will email you information.
- You decide whether any study is a good fit for you and whether you want to participate.
What is done with my data? Will it be safe?
The registry is managed by a committee of scientists, the Steering Committee. When studies arise, the registry will send out an email asking you if you are interested in the study. If you reply that you are interested, then you will be provided with information to enable you to contact the study team directly. The registry will never share your information with anyone.