I just got this today. *The Epilepsy Phenome/Genome Project (EPGP) is now enrolling patients with Epilepsy. *I received a little information about the project, and thought I would pass this along to any families who might be interested in participating. Or go to their web site to*learn more.
-Robert
*
EPGP is funded by the National Institute of Neurological Disorders and Stroke and aims to better understand the genetics of epilepsy (such as what causes epilepsy, why do people respond differently to medications, and how can we improve treatments)
*
Participation requires about 2-4 hours of time total, and involves a blood draw, interviews, and medical record review. *Participants will receive a small compensation for their time (typically a $25 gift card). *
*
EPGP is currently enrolling individuals with Epilepsy. provided they meet eligibility criteria and both biological parents are also willing to enroll in the study.
*
Here are the screening questions:
*
1. * * * Has your child had any additional genetic or metabolic testing?
2. *If so, what were the results?
3. * * * When and how was your child given a diagnosis of Lennox Gastaut Syndrome?
4. * * * Were you ever been told there was a cause?
5. * * * Does your child have a history of any of the following:
a. * * * Congenital TORCH infection?
b. * * *Premature birth before 32 weeks gestation?
c. * * * Neonatal hypoxic ischemic encephalopathy?
d. * * *Meningitis or encephalitis?
e. * * *Stroke
f. * * * *Intracranial hemorrhage?
g. * * * Significant head trauma?
6. * * * Do you happen to know what your child’s EEG results are?
7. * * * Has your child ever had an MRI of the brain? If so, what were the results?
8. * * * Did your child exhibit any signs of developmental delay or autism prior to seizure onset?
-Robert
*
EPGP is funded by the National Institute of Neurological Disorders and Stroke and aims to better understand the genetics of epilepsy (such as what causes epilepsy, why do people respond differently to medications, and how can we improve treatments)
*
Participation requires about 2-4 hours of time total, and involves a blood draw, interviews, and medical record review. *Participants will receive a small compensation for their time (typically a $25 gift card). *
*
EPGP is currently enrolling individuals with Epilepsy. provided they meet eligibility criteria and both biological parents are also willing to enroll in the study.
*
Here are the screening questions:
*
1. * * * Has your child had any additional genetic or metabolic testing?
2. *If so, what were the results?
3. * * * When and how was your child given a diagnosis of Lennox Gastaut Syndrome?
4. * * * Were you ever been told there was a cause?
5. * * * Does your child have a history of any of the following:
a. * * * Congenital TORCH infection?
b. * * *Premature birth before 32 weeks gestation?
c. * * * Neonatal hypoxic ischemic encephalopathy?
d. * * *Meningitis or encephalitis?
e. * * *Stroke
f. * * * *Intracranial hemorrhage?
g. * * * Significant head trauma?
6. * * * Do you happen to know what your child’s EEG results are?
7. * * * Has your child ever had an MRI of the brain? If so, what were the results?
8. * * * Did your child exhibit any signs of developmental delay or autism prior to seizure onset?