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Post Info TOPIC: Is distance a big issue in clinical trials?
LC


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RE: Is distance a big issue in clinical trials?
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suziq wrote:

Hi LC, If you can give us a city that you live near then maybe someone might hear of a clinical trial or study center near you. Mid West is a pretty large area. The one I am on was not posted as open. The info was just sent to the study centers they use. I was on the list at the study center.  Clinical trials are the way to go if you can get into one. 




I am in Decatur, IL, which is central Illinois. I don't mind driving a bit though. I am treatment naïve and feel pretty good for the time being. I agree that trials are the way to go if possible. How do you get on the list at a study center?

__________________

Genotype 1a, VL 1,151,923.  51 years old.  Started treatment on AbbVie TOPAZ II clinical trial Oct 10, 2014!  Undetected at weeks 2 and 4! 



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Hi LC, If you can give us a city that you live near then maybe someone might hear of a clinical trial or study center near you. Mid West is a pretty large area. The one I am on was not posted as open. The info was just sent to the study centers they use. I was on the list at the study center.  Clinical trials are the way to go if you can get into one. 



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Geno 1A  Age 82 Treatment naive Cirrhotic Told I had liver disease in 1966. Diagnosed as Hep C 1999.Started Merck clinical trial with Riba on 9/9/2013 Week 1 and 2 <25  Weeks 4, 8, 12,16,18 UND.  EOT Jan 14,2014  EOT +12 UND   JULY 1 2014 EOT+24= SVR

LC


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I left a message with my Doc's nurse since the people listed as a contact for the trial never got back with me. If I have to drive 14 hours each way, I figure it is still better than dealing with the side effects of what is out there now. I am off for 4 days at a time twice a month and I live in the Midwest. I hear the new drugs may be very expensive too, and my insurance has a high deductible.

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Genotype 1a, VL 1,151,923.  51 years old.  Started treatment on AbbVie TOPAZ II clinical trial Oct 10, 2014!  Undetected at weeks 2 and 4! 



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I think that depends on the clinical trial and the study center.   My study site is 70 miles away.  Yes, I think that they all do their own testing (blood work)as they have to submit this to the FDA to get approval. And some of the tests they need are pretty sophisticated. Also they check your daily pill diary, give new meds and ask about side effects you may have at the appointment. I carry a 24 hour contact number in case I have problems.  If I get sick or injured they want the doctor to talk with them about my trial meds and possible conflicts with any treatment needed. 

That said, for my study, I only went to the study site to be screened and then now that I am on the trial, I go weeks 1,2,4,8,12 (and weeks 16 and 18 if I am in that part of the trial) so it is only 6 or 8 trips.  Some other trials do blood work more often. 

There are lots of people here who are on or have done clinical trials and their experience may be different from mine.  I am just sharing my personal experience.

SuziQ   



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Geno 1A  Age 82 Treatment naive Cirrhotic Told I had liver disease in 1966. Diagnosed as Hep C 1999.Started Merck clinical trial with Riba on 9/9/2013 Week 1 and 2 <25  Weeks 4, 8, 12,16,18 UND.  EOT Jan 14,2014  EOT +12 UND   JULY 1 2014 EOT+24= SVR



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Hi LC, good to hear from you again.  I believe it would be ok to participate in a clinical trial outside your area as we have members who have done that, although I think you`d probably have to be prepared for frequent visits to the trial centre for blood work etc.

Have a read through this thread started by Karen (`Millercollaborative`), and you can see what she did...

http://hepcfriends.activeboard.com/t53257182/bristol-myers-3-daa-clinical-trial-wdaclatavir-asunaprevir-b/

Best of luck, keep us posted!  smile



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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 



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Hello LC

Good to hear of your interest a clinical trial. Your bio does not say what part of the US you live in but in general distance is a limiting factor based on your own time and money. If one could move temporary it could help, but the location of the sponsor (Clinic & Doctor) requires the participant to go to the sponsors location every time they have a scheduled visit and any other requested additional visits, which often happens through the weeks of treatment.

Some of our members noted having to drive six hours in Florida to their sponsor, but again it's comes down the willingness to spend time and money because the travel allowance paid is around $70.00 per visit.

The other thing I learned about trials is that they are not all listed in the gov.com site so one has to get connected with the leading Hepatologists in their general area.

Hope you find this usefull

matt 



-- Edited by Matt Chris on Sunday 17th of November 2013 03:00:14 PM

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"And in the end, the love you take is equal to the love you make"

61 year old Geno type A1, F4 Cirrhotic, started 24 weeks on Harvoni 12-17-14 ,EOT-5 week = UND, 8-31-15 =UND , SVR-24 Baby YES! 

LC


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I am not only treatment naïve, I know nothing about clinical trials. confuse  Does anyone know if you have to live within a certain distance from where a trial is held?  I am not seeing much in my area.  Do you have to drive to the place the trial is being held each time they want to see you, or can they usually do your blood work locally after an initial visit/physical/signing of paperwork? 

I am getting excited that the new drugs are getting close, and ready to get this treatment show on the road!  biggrin



__________________

Genotype 1a, VL 1,151,923.  51 years old.  Started treatment on AbbVie TOPAZ II clinical trial Oct 10, 2014!  Undetected at weeks 2 and 4! 

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