FOXG1 Syndrome Patient Registry
Join the worldwide Patient Registry for FOXG1 syndrome and help us towards therapies and a cure.
We need your help to make this registry strong and successful!
A global patient registry is needed for us, as caregivers, patients, doctors, and scientists, to better understand FOXG1 syndrome.
Why fill out this Registry?
You will help scientists better understand FOXG1 syndrome so they can develop treatments and hopefully a cure.
You will learn about drugs and therapies for symptoms, like seizures, that are most effective for children with a similar mutation to your child.
You will be able to connect with research studies and scientists.
You will learn how many children share your child’s similar mutation; what their symptoms are; and what their progress is.
You will get real answers about the syndrome! You get to know the facts!
Why this is different than the Natural History Study or other questionnaires:
Those studies are not global. For a rare disease, only a worldwide Patient Registry will be truly helpful.
Other studies do not give you back the analyzed data from a global patient population. They don’t help you make better decisions.
Scientists are not able to access information from most other studies. There is little point to collect data if it can’t be used.
Please know that your privacy is of utmost importance. This patient registry is approved by the Stanford Institutional Review Boards and managed by Stanford Neurogenomics. Any information shared with us will be stored securely. As part of the registry, interested scientists can submit requests to access de-identified data - this means that they will not be able to identify you or your child from the data we provide. If you have any concerns or additional questions, feel free to reach out directly to the FOXG1 Research team.
Your participation in this registry is voluntary and will not change or influence your routine medical care.
When you enroll in the FOXG1 syndrome Patient Registry, you will be asked questions about the person with FOXG1 syndrome. Please take your time going through the questions and answer them to the best of your ability. If there are questions you don’t know the answer to, you can come back later to fill those.
It will be important to enter your child’s mutation, and the name of a doctor or healthcare provider who knows your child well. If you do not know your child’s mutation, you can ask your doctor for a copy of the genetic testing result.
Thank you again for taking the time to be a part of our mission to better understand and find therapies for FOXG1 syndrome – together we can build a better world for our children!