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Tracey5399
10-04-2005, 11:31 AM
Hi Everyone,

I am really excited to say that i am eligible for a research study they are doing, maybe alot of you have heard of it. It's all pretty new to me.
Anyway they are working w/a few hundred ICers to see if they can come up w/some sort of specific reasoning on why IC occurs.
It may go no where, but i feel very good about it and so excited to be a part of it. May be 1 step closer to finding a cure!!

If your interested PM me for details,
Tracey :)
nss
10-04-2005, 11:35 AM
My Dh heard on the radio yesterday on an interview that they were doing that. I am in Australia so its good to hear that they are getting the word out even as far as here.

Lets hope they see some conncection to why we get IC., and hopefully find a cure soon.
Janie Miranda
10-04-2005, 12:16 PM
Hi Tracey,

I'm in the study too! I'm also going to be in the genetics study since my aunt has IC.
PenguinK
10-04-2005, 12:33 PM
I'm in the EPIC study too! I can't wait until the results come in.
KK
massagedoula
10-04-2005, 01:22 PM
I am also in the EPIC study from the U of Maryland! That is funny, I bet most of the study are members of the ICN! I guess it is a small (IC) world!
Janie Miranda
10-04-2005, 01:28 PM
LOL - you are probably right massagedoula!
kadi
10-04-2005, 01:47 PM
me too.
nss
10-04-2005, 07:59 PM
I will keep an eye on this post to hear how you all go.
massagedoula
10-05-2005, 05:57 AM
It is a long term study so you better keep a long term eye on the post!
Pac168r
10-05-2005, 11:35 AM
I just had a preliminary phone interview yesterday. Any thing to help get to the cause of IC.
massagedoula
10-05-2005, 01:57 PM
I think it is SO IMPORTANT that we all are participating in this study. After all, it may turn out that we are only going to help find a cure for our own disease, or at least prevent others from getting it in the future!
nss
10-05-2005, 03:29 PM
Oh how I wish they would do some IC study here in Australia. I would jump at the chance.

:)
massagedoula
10-05-2005, 03:39 PM
Nss, It is a phone study so I don't know if they will take people from other countries. You could always contact them and ask! It is a study to try to fnd out what precipitating factors caused each of us to get IC, and then look for a common thread. It is called the EPIC (Events Preceding Interstitial Cystitis) study.
Janie Miranda
10-05-2005, 05:04 PM
Massagedoula,
What stage are you in with the study? I finished my 1st main interview and sent back the urine specimen. They said they would call me again in six months I think.
massagedoula
10-05-2005, 05:58 PM
Whoa!
Are we talking about the same study here? How odd...I don't know anything about a urine specimen....Cool! I just filled out the paperwork with my doctor's names on it and sent it back. That is as far as I got so far! They have not even called me for an interview yet, just that first quick phone screening to see if I was eligible.
Tracey5399
10-07-2005, 06:02 AM
I start my 1st phone interview on Tuesday. I am waaaay excited about the urine speciman...wouldn't it be great to have an easier way to diagnose. Looking forward to keeping in touch on how we are all doing w/the research!!!

Tracey :)
Janie Miranda
10-07-2005, 09:23 AM
massagedoula,
Yep its the same study. I think the urine specimen is opional. They made it super simple to send back. Fedex even came to my door to pick it up and of course it was all paid by the university of maryland.
After my interview they sent me a $25 dollar give card for payment. I think you get another $25 if you send in the urine specimen. course, I wasn't doing it for the money - just glad to help with the study.
jane
purpleviolet
10-07-2005, 02:22 PM
What is being studied at the U of Maryland exactly. Did it require recently diagnosed people? Thanks
Janie Miranda
10-07-2005, 03:03 PM
They are studying the events that preceded getting IC. They want people who have had it for 12 months or less. You actually don't even have to have a firm diagnosis. I know I didn't when I was first accepted into the study but later on did get a diagnosis.
massagedoula
10-07-2005, 07:30 PM
I am going to call and ask about that urine sample! I want to do it too!
Janie Miranda
10-08-2005, 11:03 AM
massagedoula,
after your interview they'll give you the option to do it so you won't have to call them or anything.
Janie Miranda
10-12-2005, 03:38 PM
Just got a call from the University of Maryland. Looks like I'll be excepted into the genetics study too since I have an aunt with it and my mom and sister have a lot of IC symptoms although they are undiagnosed.