Epilepsy Phenome/Genome Project

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Meetz1064

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First, let me say, I took this post straight off of Batman's board. But, I thought it would be an important post over here, too. So, Batman, please accept my apologies for the cut and paste job. Meetz :twocents::noevil:

http://communityforum.epilepsysupportgroup.com/index.php?topic=24.msg130#new

Re: Epilepsy, Pregnancy, Children

Hi, my name is Kristen and I am a nurse at the Epilepsy Center at the University of California, San Francisco. I thought that the people reading this thread might be interested to hear about a research study that I work on, the Epilepsy Phenome/Genome Project (www.epgp.org). This project is taking place at 13 epilepsy centers across the country, and is funded by the National Institutes of Health. The purpose is to better understand how genes influence epilepsy and a person's response to seizure medication. Participation involves a blood draw and answering questions, and you do not have to travel to a clinical center in order to participate.

The study is enrolling 2 types of people: 1) people with epilepsy who also have a brother or sister with epilepsy, and 2) people who have seizures due to infantile spasms, Lennox-Gastaut Syndrome, polymicrogyria, or periventricular heterotopia. The findings from this study have the potential to improve epilepsy care for many families in the future, and so we'd like to get the word out to the entire epilepsy community.

I'd be happy to share more information with anyone interested, and please let me know if anyone has suggestions for how to spread the word!

Thanks,
Kristen
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Urrrrr. :crying: You beat me to it. I was going to work on it tomorrow (Tuesday 9-9-2008 ) by typing up one message, and then posting it on multiple online community forums and epilepsy support groups that I'm still a member of. With the help of Kristen joining my community forum today, and by sending her a private message via my community forum, I was able to communicate with her directly by phone. Good, long conversation with her.

There's more information I want to share with everyone, and I'll do so by creating a message, tomorrow.
 
Ooops. Sorry. :paperbag::bigsmile: *BLUSHING* But it's such great information.

We'll be anxiously waiting to hear what you have to tell us though......:clap::clap::bigsmile:
 
Yesterday afternoon, on Monday, September 8, 2008, one individual, Kristen, became a member of my epilepsy community forum. The reason why she joined is because she wants people to know about a research project called the 'Epilepsy Phenome-Genome Project (EPGP)', which according to the message she posted, "...is the largest study ever undertaken to understand more about how genetics is related to epilepsy and a person's response to seizure medication. It is funded by the National Institutes of Health and taking place at epilepsy centers all across the country." Kristen does not have epilepsy, but she is a nurse at the Epilepsy Center at the University of California, San Francisco. The website for the Epilepsy Phenome-Genome Project is www.epgp.org and there are other websites that also have some information about this as well.

One of those other website is on the home page of epilepsy.com. There is a section smack dab in the middle of the page that has a tab labeled 'Epilepsy.com Spotlight'. Of the four topics that are currently listed, the last one is titled 'Genetics and Epilepsy'. This just so happens to contain a link to some more information about the EPGP. Then, also on that same home page of epilepsy.com, there is the blogtalkradio. One of the upcoming blogtalkradio discussions is also going to be for the 'The Epilepsy Phenome / Genome Project'. The discussion is going to take place on Tuesday, September 16th at 8 PM Eastern standard Time. For those of you who might be interested in listening to this upcoming blogtalkradio discussion, go to the homepage of www.epilepsy.com and click on the section for blogtalkradio. Doing this will take you to another webpage titled 'BlogTalkRadio - Epilepsy Talk Radio Show'. This will "...allow you to listen to radio shows over the Internet without having to download any plug-ins or applications." On that very same webpage there are 4 choices listed in a table, which are, 'Just Listen', 'Call and Ask Questions', 'Participate in Chat', and 'Listen at a Later Date'.

Another website that also contains some information about the EPGP, can be located on the website of www.epilepsyfoundation.org This website is the homepage for the Epilepsy Foundation, and also, smack dab in the middle of that homepage in the section titled "in the spotlight", is the 'Epilepsy Phenome Genome Project'.

Shortly after Kristen joined my epilepsy community forum and posted some information in a message about this research project, I came in direct contact with her by communicating with one another over the phone. It is my understanding that the individuals who are doing this research project are only in search of siblings with epilepsy. And I am not talking about just young children. By searching the Internet I found another website that contains information about who might be eligible to participate in this study. "You might be eligible to participate in the study if you: Are between the ages of four weeks and 60 years old; Have been diagnosed with IGE or LRE and have a sibling with epilepsy; Have been diagnosed with IS, LGS, PVH, or PMG and both of your parents can volunteer. You will be excluded from this study if you: have epilepsy as a result of head injuries, stroke, brain infection, other known causes of seizures or epilepsy ". Again, if you would like more information about EPGP, especially about "Who can participate in EPGP?", you can go to the website of www.epgp.org, and or call Toll-free phone: 1-888-279-EPGP (3747).

Now here's something that I would like to add here myself. I'm sure many of you are familiar with the search engines of Google, Yahoo, MSN, and probably a few others as well. So how would you feel if you were to have a free search engine that has the search engines of Google, Yahoo, MSN, and many, many other search engines, combined into one? There is one that I've been using for less than two years now, called the 'All the Internet'. For more information about this one search engine you can go to www.alltheinternet.com With the help of the 'All the Internet' search engine and typing "Epilepsy Phenome-Genome Project" in the search box, here's the Weblink that came up in the search results
www.alltheinternet.com/texis/open/alltb?p=all&q="Epilepsy+Phenome-Genome+Project"
 
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I find it interesting that they leave out people who've been diagnosed with idiopathic epilepsy who have siblings with related idiopathic conditions such as narcolepsy but don't require siblings to have similar problems when the issue in question is a developmental abnormality
 
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Is there anything similar going on in the UK? I have...my grandmother, my aunt, my cousin, me and my daughter who have ALL had a diagnosis of left temporal lobe Epilepsy, and wondered if anyone would be interested...?? OH...and when did this section appear? seems to have appeared while I was absent!
 
Our goal is to identify genes that play a role in causing epilepsy. Identification of the genes that raise risk for epilepsy is potentially very important for early identification and treatment of susceptible individuals. It could also provide important basic information about the causes of epilepsy. This new information could lead to development of new treatments or strategies for prevention.
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http://www.cumc.columbia.edu/dept/epilepsy/index.htm

I could not find a date on these studies.
 
New Study - Epilepsy Genome Project

Hi, Everybody,

My doc told me about a new study that's going on to identify the genes responsible for genetic epilepsy.

What is EPGP?
The Epilepsy Phenome/Genome Project (EPGP) is a research study funded by the National Institutes of Neurological Disorders and Stroke. The goals are to better understand what causes epilepsy, why some families have several people with epilepsy, and how we can better predict which anti-seizure medications (or no medication) will work best for an individual.
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Some studies are pretty icky to participate in, but this one looks pretty easy AND it can make a huge difference for a lot of people. They only want a blood sample, an interview, and a look at your records to see what meds you've been on and how they worked.

http://www.epgp.org/Pages/Default.aspx

If you have a sibling with epilepsy (or a parent, for some types), you may be eligible. I don't know if after they test you they tell you if you have an epilepsy gene, and if so, which one. I have to assume they do. If they do, they've just saved you THOUSANDS for genetic epilepsy testing.
 
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