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.  

[curiouslady1]

I don't think anyone would want to start their own group or be responsible for it.  It is also very difficult to know that it exists because it is not publicized.  As you can see, user groups is not a highly utilized area of this web site.  I guess we will just wait.  People who have signed confidentiality agreements need to maintain their agreements.  I think it is up to them to police themselves not the forum.  But discussing side effects is not the only issue with trials.  The more important issue is just finding trials that are suitable and sharing that information.  Many people don't even know such options exist.  

[UKgirl55]

Oh yes, could we please keep it to Hep C? There's so much information to research and we need a place to go where we're all seeking the same end goal! There's nothing like being able to communicate with people whom are going through and experiencing the same trials and tribulations as you are with the same disease.

[Ozgirl707]

YES!!!!  I do agree with this idea, it would be so appreciated by so many!

I'm half way through an all oral trial and would really appreciate hearing from others on these trials
.
So many people would be delighted with being able to find out information about the different trial drugs that people are on.

This is a great idea!

~Ozgirl

[Emily_MHManager]

I thought of something here -

People participating in clinical trials are usually required to sign confidentiality agreements.  Would this violate those agreements?  Would it somehow skew the results if patients were discussing side effects, etc?

Just a thought.

Emily

[Emily_MHManager]

I have passed this on to the appropriate people, but the decision isn't usually a quick one.  How about a user group in the meantime?  http://www.medhelp.org/user_groups/list

On the right side of the page, near the top, is a link to "Start a group".

Let me know if you have any questions about setting it up.  I'd suggest that whoever is owner of the group designate at least a couple of moderators (user groups are self-moderated).

Emily

[curiouslady1]

I think it would be pretty confusing if you tried to combine too many into one forum.  The people who have posted their support here are all Hepatitis C people and this is only a portion of those HepC people interested in discussing trials at this time.  I am not familiar with the Hepatitis B virus but know that it is an entirely different infection and their trials have different goals.  But I think the most important is that you would just have too many and there would have to be constant need for clarification to see what the person wants or is talking about. I think that would be enormously frustrating for people with other forms who want to be heard or are trying to help.  

During this period and for the next few years there is a push for more involvement in Hep C trials because of the state of the science at this particular time.  We are seeing a major paradigm shift away from prior methods of treatment and a need for and discovery of more benign treatments that are in trial currently.  I don't know if that is the case with other hepatitis forms.  In fact, I don't think it is the case.