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475555 tn?1469307939

Getting into trials

I am 64, in good overall health, recently diagnosed with HCV, genotype 1b, still have pretty good blood markers, and am probably a good patient for drug trials.

I know about the NIH trials website, but it isn't patient-friendly and takes a whole lot of time and trouble going through it and then trying to contact the people doing the trial, maybe for nothing. With hundreds of trials going on, I could spend the next year looking for one.

I'snt there some central trials clearing house for patients, where you can offer yourself and see what trials are interested in you?
75 Responses
96938 tn?1189803458
Not sure if this is the site you're referring to.


Go to Search and key in criteria like      hepatitis, miami

Based on the inclusion/exclusion criteria listed, you may be able to narrow some of the trials you'll be eligible for.
475555 tn?1469307939
Thats the site. I don't understand why they make it so difficult to find a trial to get into. After all, they need us as much as we need them. There's gotta be a better way.
86075 tn?1238118691
hi, it's been my experience that clinical trials doesn't always note every  trial  offered everywhere...if I were you, I'd call, or better, go personally if you can... to all the teaching hospitals in your area (after all, I highly doubt that you'd join a trial that isn't in your area, though some do go out of their immediate radius, I had a friend who took flights to San Francisco VA because he didn't like the VA in Los Angeles, said SF was much, much better) to see if they have anything coming up...

the trial coordinators (ask to speak them right off), or nurse practitioners for the hepatologists/gastros *usually* will be forthcoming, at least that's what I've encountered...good luck to you...also, I'd ask for their criterion upon entering a trial, but I've even heard that some docs will let you bend those a little bit too in some instances....though certainly not always....just my take...
96938 tn?1189803458
Depending on where you live and the various facilities that might be in your area it might be helpful to actually be seen at one of the clinical trial hotbeds.  I had a consult at one of those university type settings quite a while ago.  Since that appointment they have called me about my interest in trials on 3 different.  After that consult they decided to list some characteristics and, apparently, they refer back to it every once in a while.
475555 tn?1469307939
Both sound like good suggestions. I'm going to find out where trials are being done around here in New York City or on Long Island (I live in Queens, NY), and go and talk to someone. Maybe I can get into a local patient database, or at least find out on a face-to-face level what's available in my area.

I'm new to this and it's all a little confusing. Thanks to both of you for your help. If you know of anyone in this forum who's from my area, please let me know.
Avatar universal
Try this link to find trials, its really good
Avatar universal
Doesnt look like it is going to work, the only other way I can suggest is to go to www.hepcaustralia.com.au and go to the 'Links' section and you will find a link called 'clinical trial portal', click on that and it will take you to it.
Avatar universal
If you are in New York, I would call Dr. Ira Jacobsen with the Hepatitis C Center in NY City.  I actually called to make an appointment with him, that is how I found my DR. here in Charlotte.  And I am about to start in a study trial in 4 wks. for naive treatment 1b's.  Maybe they can tell you where you can get in on this in your area.

Avatar universal
Forgive me for being presumptuous, but unless there's a lot more to your story you may be putting the trial cart before the horse.

Your first step is to see a liver specialist (hepatologist) for a full evaluation to help you determine whether treatment is the right course for you at the present time, as treatment advances keep getting better every day.  This may include a liver biopsy to determine how much liver damage you have or don't have.

Then, once you have been properly evaluated, and if you decide you want to treat now, then you can look into ongoing trials in the area as an option.

Two excellent liver specialists in your area are Dr. Ira Jacobsen group at NY Hospital  (he personally does not take insurance) and Dr. Douglas Dieterich at Mt. Sinai Hospital. Both have more credentials and experience than a Gastro for proper evaluation, and both are involved in major trials.

-- Jim

179856 tn?1333550962
Mike may I ask why you are so gung ho to get in a trial? Trials while they do pay for almost everything I believe do have some shortcomings such as you don't know which arm you will be put into (for example susan400 received vertex and inteferon but NO ribavirin and treatment can't work without the riba) so it was a waste of time for her.
Also, usually they won't let you have any of the rescue drugs.......and believe me if you need to get Procrit you will want it badly.

Is there some reason that you aren't going to do current SOC and see how that goes? I had both geno 1A and 1B and did 72 weeks of treatment and am SVR now 15 months post treatment.  It can work.

475555 tn?1469307939
Both URLs worked for me. Thanks. The IFPMA website looks like just what I was looking for.
475555 tn?1469307939
Hi, Jean. I'll give Dr. Jacobsen a ring on Monday. Good luck with your trial in Charlotte. Please let me know how it goes, or keep this forum posted. You and I are the same genotype and both of us are naive to treatment, so your experiences of the trial are of very real interest to me.

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