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.  

[Claire_MHModerator]

Hi, curiouslady1,

As Emily suggested, please feel free to create a user group; it requires no responsibility on your part, as you can moderate it or not, as you see fit.  If you prefer not to do so, perhaps one of the many members you've mentioned who would like to have such a group would like to start the ball rolling.

We don't "promote" any of our forums (unless you're referring to the Forums tab above).  Our User Groups are similarly featured on the same tab, under "User Groups".  And, like our Hepatitis C and Hepatitis Social forums, any user group for HepC clinical trials would show prominently in a site search that used keywords "hepatitis", "hepatitis c", "clinical trials", and/or "research".

And of course, since the trials are likely to be of interest to our members with Hepatitis C, you can continue to discuss clinical trials in the Hepatitis C forum as you've been doing.  If you decide to create a user group or you have any other questions, please feel free to let me know via PM.  

Claire
MedHelp.org

________________________________________________

                ** CLOSED DISCUSSION**
               NO MORE COMMENTS PLEASE
________________________________________________

[Puppyluvur]

This phone has a vocab all it's own sometimes.lol

[Puppyluvur]

Oops, bad typo. That's what I meant too curious. Personnel matter.

[curiouslady1]

Puppy,  I meant personnel issue, not personal issue LOL :) I though they cannot manage what they already have.

[Puppyluvur]

I for one am very  sad to see such a quick answer of no from medhelp. This possible new forum would be so welcomed and helpful for so many people. I have to agree with curious , is this a personal issue? I agree also about other forums that are basically dormant. A new forum on Hep C trials would probably rate up there with one of your most active forums. I ask you to please reconsider. There are so many of us that need this and want this. Our lives rely on a lot of this information of our fellow Hep C Friends. I do not believe you would regret it.

[curiouslady1]

I see that you have created several forums at the request of only one individual. Some of these forums have been rather dormant with little activity.  Yet, there are a number of people requesting this forum and there is an abrupt refusal from Medhelp.  My question is why?  Is it a personnel issue?  An issue with the subject matter?  Please clarify.  Thank you.

[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.  

[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.    

[penn1023]

Yes, I would be in favor of curious lady's excellent suggestion.

[Emily_MHManager]

Hi everyone -

I will pass this suggestion on, but are these trials only applicable to hep C, or will they apply to other viral heps, too?

Thanks!

Emily

[researchmonkey326]

Having just finished up in a trial about five weeks ago, I would have really appreciated having a place to go to discuss what I was going through.  Now that I am finished, I would be happy to share my experiences with others that are considering or currently in a trial.

[Susan_1a_CC]

It would seem that a forum for hepatitis trials/research is one of those excellent ideas that makes one slap their forehead and say " why didn't I think of this?"  It's an obvious need and I would certainly appreciate seeing this as an offering here on MedHelp very soon.

I really like this idea, Curiouslady1, and am glad that you've brought this up.

[Mary4now]

Hi, I was very happy to be contacted about a study for treatment naive with protease inhibitors and polymerase inhibitors & SOC. started 1/25/2011 ended July
Because I had very little damage to my liver ( I think I got this 30 yrs ago, but dont know for sure ) and no insurance, and a complicated work situation I decided to wait to treat.  I asked our local research facility if I could register and be notified of a study that fit my situation and 2 yrs. later they called me.
The HCV center here started and continues as an HIV treatment and study center, so they were no stranger to treatments.  
I lucked out, I entered the study and I got all the drugs.  I was und at week one or two and didn't get serious sides until my 12th or 13th week.  I signed up for the sub study and I'm glad I did.  you really get to know your coordinators and they you.
I have a friend in the same study who didn't get the study drugs but did well enough that they kept her on SOC for 48 weeks.  She is laboring through it and counting the days.
I stopped treatment at 24 weeks and am grateful for that I started showing skin problems around that time, herpes around my lip and nose, and a lot of peeling in those areas, as well as some itchy rashes @ my injection sites.  These were all manageable, but I'm happy to be without them.
My sides were nausea, low hgb, so I was very weak and tired.
I found everything to be manageable and part of that management was I took time off from work ( got layed off ) for a couple of months right at the end and that helped.
I had a lot of help with the decision to treat because of the information I got from the study center, and as I started treating I learned more and more.  The one thing that cinched the deal was that I could quit the study anytime without any trouble.  It was nice to know that I could make that decision.  Of course once you're into it you want to finish.
I reduced my Riba toward the end around 18 weeks I think and it may have helped a little.  
I really liked the monitoring every week, during the treatment and getting to know all the providers.  
I like Gilead as a company and they were really thorough.  
I received all my labs as they came in and could get copies of them.  Gilead makes sure all your questions are answered,  they did not provide rescue drugs, but modified the treatment in my case low hgb.
I missed a couple shots due to injection failure, and I missed taking a dose of the PI's , "things "worked out, so far"  I'm still hanging in while I get my monthly labs, it will be my 4th month post treatment Nov. 11.
we shall see................. but we all tried our best. that's how I see it.
I hope my story helps,
I of course wish everyone good results,
Mary

[curiouslady1]

Oh and I wanted to point out to the mods that there are a number of forums where people post once a month or less.  I think this forum would be quite active.  If things settle down in a few years and the miracle drug is discovered (LOL) you could always disband it.