Hepatitis Trials and Research Forum

[curiouslady1]

I wonder if it is possible to consider starting a community for Hepatitis C trial/research discussions.  I would think it could operate for a few years at least while the subject is heated up as it is now.  With the recent approval of new drugs on the market, more and more people being diagnosed, a multitude of trials to select from for those who opt out of traditional care with its severe side effects, and the need to share information about treatment experiences with drugs approved for investigational use only, etc, etc, it could really fill a gap in helping people access care.  It appears that there are a few of us who are interested.  I will ask that they express their opinion here.  

[Emily_MHManager]

Hi there -

I'm not sure why you think our user groups are not active, because we have over 600 user groups, and some have several hundred members.  

At this time, we have decided to not open another Hep C forum, but please feel free to start a user group.  If someone starts one, and makes some people moderators, it shouldn't be too much responsibility.

Let me know if any of you want/need some assistance setting this up.

Emily

[curiouslady1]

Hi,  The purpose of the forum would be to fill in the gaps that the current forum does not address and that has to do with anything related to being in experimental trials for Hepc regardless of what medicine is used.    There are experimental trials which involve incivek and victrelis and ribaviron and interferon.  The regular Hepc forum that is already in existence should be sufficient to discuss the routine treatment that people are undergoing.  Anybody who has an opinion about experiemental trials for HepC is also welcome to join and add their two cents regardless of whether they themselves are interested in or involved in research directly.  I don't see it as quite that exclusive but naturally, there will be an effort to keep it on topic.

[TripleCrown]

I suppose that would leave out incivek and victrlelis unless you were currently in a trial or would it any discussion not soc?

[fingrsxd]

Hi there... I am participating in the Pharmacette vrus HCV study. I take 2 drugs, PSI and BMS daily. I have not signed any confidentiality forms. Please let me know if anyone has any questions regarding my study. You can read my journal entries by doing a search for fingrsxd in the medhelp hep c community. Good job curious:-)

[curiouslady1]

Dear Mod:  One other point related to the above post.  I have gone back a year on this forum and have not seen any request with this level of support from the membership community.  I think we would be appreciative if you would bring this information to the attention of the powers that be so they are aware of how many people are advocating for this change.  Thank you.  

[curiouslady1]

Dear Mod:  As you can see, there are many people who are supporting this request not just one or two as is the case with the many other requests you get.  Having a forum for Hep C trial and research discussion fills a gap for people which cannot really be filled by other means.  Good researchers take into consideration that there is some back room discussion of their drugs and there are statistical adjustments that are made to cover it.  Nevertheless, reputable and wise drug companies and researchers are interested in recruiting motivated participants and do their part to ensure that drugs they are using have been properly vetted in the lab and in prior trials so that they can attract more participants.  They, as much as anyone, count on having participants who are knowledgeable, informed, know what is expected of them and can comply with protocols.  We can assist in that process as well.