Calling newly diagnosed patients! - You can participate in a study!

[icnmgrjill]

IC Clinical Trial Announcement
EPIC Study Seeking Newly Diagnosed Patients to participate in study from home.
Dr. Jack Warren, University of Maryland School of Medicine, announced during the 2004 annual meeting of the Society for Urodynamics and Female Urology (SUFU) the beginning the EPIC study. Dr. Warren has, for a number of years, explored potential risk factors for IC. This new study, funded by the NIH, will further that research and hopefully identify critical risk factors that may lead to the development of IC. This is a rare opportunity for IC patients in the USA to participate from the comfort of their home. No travel is required. You must have had symptoms for less than 12 months. Participation includes a telephone interview and mail. Participants will receive a small stipend of $25 for their time.


For More Information Contact:
Linda Horne
Recruitment Coordinator
University of Maryland Interstitial Cystitis Center
10 S. Pine Street
Rm. 9-00, MSTF
Baltimore, MD 21201

Toll Free: 1-877-STUDY IC (1-877-788-3942)
Fax: 410-706-4200
E-mail: studyic@medicine.umaryland.edu
Website: www.icresearch.umaryland.edu

[HillaryD]

I just did the 1st interview, it was 15 minutes long. They will be sending me a packet with information and Dr's release forms and then they will set up and hour long telephone interview. They also told me that they will contact me about every 6 months for a couple of years to check on my status. I hope these interviews help, I will do just about anything for research on IC.

[ChristineW]

I am interested and have had symptoms for years....and diagnosed Id say no more than 3 mos ago,
Christine

[Sarojini]

I called them today... someone is going to call me back tomorrow.

[ChristineW]

I emailed them so I geuss I will hear back as well.
Christine

[blue]

I'm going to call tomorrow!

[PikkuMyy]

I'd like to do it but I've had symptoms for a few years - so Christine, you can't do it either! The 12 months refers to symptoms, NOT diagnosis. Boohoo!

Emily

[ChristineW]

Thanks Emily, that Stinks.
Christine

[icnmgrjill]

It's not that it stinks. What they are trying to do is find out what's happening in that very first year... to help understand what the earliest changes are. So, don't take it personally if you've had symptoms longer than a year and can't participate. I can't participate either... but we desperately need this "early onset" research.

Jill :)

Please let them know you heard about it on the IC NETWORK!!!! I talked with the researcher last Saturday and asked if we could post it.

[ChristineW]

Jill
Oh I understand, hey whatever way they will research IC Im all for it....actually the did email me and said if I fly to Baltimore I can be a part of it...I cannot do that however. But like I hop ethey reseach away and away!!!!!!!!!!! ITS MUCH NEEDED!
Christine

[Sarojini]

I talked to the study coordinator today on the phone.... I'm going to do the study, but...

She asked how I'd heard about the study, and I said,"The ICN Website." She said that ever since the study has been posted on the ICN and ICA websites, they've gotten a huge response.

:)

[LeolaSiningLily]

I too was just diagnosed this month. I've been having bladder symptoms since last month, but I was diagnosed for months having "overactive bladder". I'm glad I finally got diangnosed with the proper illness. I contacted them last week by e-mail and will also be part of the study.

I want to do whatever I can to help research IC.
Thanks for passing the info on:)

[Coleen]

I also sent an e-mail today. I will wait for a response also. I have been having symptoms since September. I was diagnosed in January so I beleive I am safe. I am within the 1st year. And let me say what a year this has been!!!!!!! I am definately FOR the research though. If there was something to do to stop it way in the beginning then that would have been nice. Well good luck to all that are in the case studyand everyone else for that matter :kiss:

[aprjax]

I've done my first interview and I just mailed back the paper work. The doctor talked to me to make sure that I could tell the difference between IC and my IBS and then he told the lady that I would be good. So I should be hearing from someone soon. I think its great anything to try and find out more about this I'm all for it.....

[Kristi2]

HI All,

Just had my hour interview for the study. The interviewer was very polite and the questions were not what I would consider to be tooooo personal. Lets face it, after what kind of tests and all the docs we see to get dx'd, all modesty is out the window. I hope that with this information from me and all the others who volunteer, that the researchers will find a common cause. Finding a cause for this horrid disease will hopefully mean a cure is not far behind.

I encourage everyone who had symtoms start with in the last year to please think about participating.


Kristi

[LeolaSiningLily]

I too have done the interview and sent back my paperwork. I'm kinda excited about this. I hope this research helps us out someday.

[ChristineW]

GOOOD LUCK ALLL!!!!!!

[classics]

I've had symptoms for eight months, but no official diagnosis. Urologist is guessing IC. but hasn't done a cystoscopy.. Do I need to have a cystoscopy to make if official?

[ChristineW]

My uro diagnosed me after the cysto with hydro that it was IC..so I would think so, but thats what my experience tells me, anyhow.
Good Luck to ya!!
Christine

[LeolaSiningLily]

When I did the interview, she did tell me I had to be diagnosed, from one of the following....
Cytoscopy,
Urodynamics,
Hydrodistension (sp?)
Or Pottasium Sensitity Test...This is the one I was diagnosed with.

This study has approximately 800 people participating.

I'm excited and hopefully they'll be able to find some of the causes. I myself, seem to think after 4 abdominal surgerys my pain, and urgency had increased, so this leads me to believe they are connected somehow.

[ChristineW]

See I agree, I too had many abdominal Surgaries! I had 3 csections and I had a partial hysterectomy (due to the pain I have now ...which was IC all along but we didnt know that then) and right before being diagnosed with IC had the rest of my hysterectomy completed, by removal of my ovaries..the partial hyst and the ooperectomy was both done in the same scar as my sections...so that is 5 surgeries in the same area within 9 years, most of them (3 of them) done within the last 2 years...
to then find out it was IC all along...I dont believe the surgeries helped me any and/or were part or all of the cause for this!
Christine

[Sarojini]

I think you have to have an official diagnosis... the study coordinators need you to fill out a release form to get your medical records pertaining to your official diagnosis by cysto/hydro or PST, etc.

[mayray518]

I live in the DC area and have met Linda and Dr. Warren at the University of Maryland. There is a wonderful group of people there that want to do everything to help us ICers.

[sleepyangel30]

thats good news mayray518:angel: i might get a call from them soon. i emailed them. i've had ic less than 12 months.

[classics]

I hope to be participating in the study. I received the packet with the medical release forms and will be sending those back tomorrow.

For those who have had the phone interview could you tell us something about it?

[KEC]

I just signed up too. I hope to hear from them soon. Kathy

[michelleskw]

Hmmm... My IC was not sudden, but I have only been feeling extreme pain for a few months, and was just diagnosed, though I'm not really sure exactly when I first got IC, it could have been as far back as a year ago, oh well, I'll give them a call and see what they say. This sounds interesting, and I would love to help with their studies.

[Daniel]

Can Canadian's participate?

[mayray518]

good question daniel. I would hope so. you would probably have to make trips to Maryland if you are able to do so.

[tommygal]

I will most likely be diagnosed next week, (having cystoscopy on Thursday, and almost positive it is IC) But it said something about having it less than 12 months, and I have had the frequent urination since I was a little kid, and pains for about 5 years now, So I probably can't do it then, right?