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#16152 - 09/12/06 08:36 AM Lamellar...clincal trials. Recruiting now
Chrissie Offline
Member

Registered: 07/20/06
Posts: 122
Loc: The Gap, Brisbane, Qld Austral...
http://clinicaltrials.gov/ct/show/NCT00282724

On my reading found this one

Chrissie

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#16153 - 09/12/06 04:19 PM Re: Lamellar...clincal trials. Recruiting now
wva Offline
Member

Registered: 08/08/05
Posts: 401
Loc: Detroit, MI, USA
That is interesting. I was supposed to be in one study around ten years ago in Michigan at the University of Michigan and I moved away at the time. It looks like this study is happening in other countries and not the U.S. I would like to hear from the people that do the study afterwards to see what they think of the products being tested and its effectiveness. We can keep our fingers crossed and see from there. Thanks for the info.

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#16154 - 09/12/06 05:24 PM Re: Lamellar...clincal trials. Recruiting now
Laura Phillips Offline


Member

Registered: 07/31/08
Posts: 12
Loc: Detroit, MI
I spoke with Jean today in FIRST's offices. She had recently spoken with the president of the company responsible for these Liarozole trials and was told the following:


Quote:
We are not recruiting in the USA since the FDA did not allow us to start the clinical program in this country. We are recruiting in 8 other countries including Canada . We have currently about 50 patients with lamellar ichthyosis in our study. We need a total of 98. Any help through you can give through your international contacts would of course be appreciated.


Jean said it would be alright for me to share that with all of you--and I knew folks would appreciate hearing that additional information--so now you have it! (Many thanks, Jean!)

Laura



[This message has been edited by Laura Phillips (edited September 12, 2006).]

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#16155 - 09/13/06 06:35 AM Re: Lamellar...clincal trials. Recruiting now
Luciana Offline
Member

Registered: 05/18/03
Posts: 63
Loc: Neuchâtel, Switzerland
Hi everybody,

I know that they did the trial in Netherland 9 years ago (Jac from this BB participed), and that they are doing it (on a second group of people) in Italy now, the first group finished it in July. I had the opportunity to ask 2 persons what they thought about the Liarozole, and both were very happy with it (they very lucky to have the medecin and not the placebo... trial is done in double blind (right word?) ).
It seems that the medecin helps the skin like the Neotigason does, but has less side effects.

Take care, and all the best for everyone.

Luciana

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#16156 - 09/13/06 05:46 PM Re: Lamellar...clincal trials. Recruiting now
thehodgees Offline
Member

Registered: 01/29/06
Posts: 130
Loc: Woodstock, ON, Canada
Luciana,

Do you know if Liarozole helps with erythroderma?

CH
_________________________
***********
Craig and Sarah Hodgkinson (aka Dad and Mom to Matt and Ema)
Ema has been diagnosed with Congenital Ichtyosiform Erythroderma (CIE)

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#16157 - 09/14/06 02:55 AM Re: Lamellar...clincal trials. Recruiting now
Luciana Offline
Member

Registered: 05/18/03
Posts: 63
Loc: Neuchâtel, Switzerland
Hi CH,

I know it helps people with CIE non bullous too,
but I've asked a woman who tried the Liarozole (she has LI), if it could also help CIE bullous or other types, I let you know when she gives me more info.

Take care,

Luciana

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