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Author Topic: Long Term Non Progressor study - Global recruitment  (Read 2695 times)

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Offline OzPaul

  • Member
  • Posts: 410
  • a very blessed 29 year ltnp
Long Term Non Progressor study - Global recruitment
« on: January 10, 2007, 06:33:29 PM »
Hi everyone

This is to call attention to the expanded global recruitment for the Harvard/MGH 'Elite Controller study'. The goal of the study is to recruit 1,000 'elite' an viremic controllers. When I spoke with Bruce Walker MD from Harvard on my last trip to Boston for the study he said that recruitment was going well with nearly 300 subjects thus far. Many particpants have come from  the USA and Canada and it is desired that many more subjects can be found globally, thus this new thread. There are presently partcipants from Europe and Australia and it is hoped more poz people will see this thread and join the study. This study is broader than studying LTNP's only. There is a link at the end to view the study in it's entirety

What is the Elite Controllers study?

The HIV ELITE CONTROLLER STUDY is a collaborative effort between academia and the community to study on an unprecedented scale, HIV infected people who have been able to maintain viral loads at or below the limits of detection. This collaboration, which brings the power of the Human Genome Project to the study of HIV, will address the key viral, host genetic and immunologic contributions to this extraordinary outcome of infection.



Who is eligible for the study?

Participants in the study are:

HIV positive adults between the ages of 18-75
Maintaining viral loads below 2,000 copies/ml
Not taking medications for HIV
Willing to have a routine blood draw for scientific research

Priscilla Padilla is the international recruitment specialist for the study. She works directly with study co-ordinators at Harvard/MGH.

If you or someone you know may be interested in joining the study, she can be conatcted at
pspadilla@partners.org
or 617-643-3643 which is in Boston.

She can describe in detail what your participation might be and make arrangements for a blood draw with your health care provider.

Thanks manchesteruk (aka chris) for the heads up at the 'You may be an LTNP too' thread.

My background is as a 25 year LTNP 'elite controller' who particpates in studies both in the USA and in Australia.. There are several AM Forum members who are enrolled in this study including Zephyr, Emeraldize, Bobino and others.

Thanks everyone and spread the word.

Cheers
Paul

here's a link to the study
http://www.mgh.harvard.edu/aids/hiv_elite_controllers.asp
« Last Edit: January 10, 2007, 06:41:09 PM by OzPaul »

Offline ms_stress28

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  • Posts: 8
Re: Long Term Non Progressor study - Global recruitment
« Reply #1 on: February 18, 2007, 10:41:09 AM »
I just inquired about program- I think i may be a controller my VL is 56 (undtcbl) my cd4 861 (no meds ever)
I've been poz i think since 04'- How many of us are there?
-Stress

Offline bobino

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  • Posts: 264
Re: Long Term Non Progressor study - Global recruitment
« Reply #2 on: February 18, 2007, 04:07:01 PM »

Ms Stress,

Not sure how many of "us" there are, but perhaps Zeph and OzPaul could give you some info about how many people are enrolled in the study. 

And you should remember two other things.  First, the Boston study is not the only elite controller study going on.  I'm participating in another one conducted by Dr. Jay Levy here in San Francisco, and he's always looking for study volunteers.  Levy's study is different from the one going on in Boston, which I understand is focused on genetic factors that may have bearing on the body's ability to control viral replication.  Levy's study is following its participants over a period of many years to try to identify people who are, in Levy's view of things, "true" elite controllers. 

Which leads to the second thing you should keep in mind -- there appear to be different definitions of who qualifies as an elite controller.  From my discussions with Dr. Levy, his definition of "elite controller" is pretty narrow, and includes only people who've been able to control viral replication for 10 years or more.   So if you're trying to figure out how many of "us" there are, you have to be careful to ensure that everyone is using the same definition of "us."

John
Suivons les rivières
Gardons les torrents
Restons en colère
Soyons vigilants

Offline ms_stress28

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  • Posts: 8
Re: Long Term Non Progressor study - Global recruitment
« Reply #3 on: February 22, 2007, 08:38:36 PM »
Hi John,

Thanks for your response, I do realize according to different sources the term Eite/Viremic Controller can be
summarized differently. Although I am newly diagnosed( not newly infected) I have reached out to many !
and it is still uncommon for one to have the ability to suppress this virus even to standards of <400 VL without meds.
The reason for me contacting Paul or Zeph was to inquire as to the possibilities of Long term suppression in someone in my particular situation.

So although one has not been infected 10 years to qualify for that particular study with Dr.Levy, Doesn't this natural ability still deserve the proper research? Or should I just wait 10 years.
-Stress

Offline OzPaul

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  • Posts: 410
  • a very blessed 29 year ltnp
Re: Long Term Non Progressor study - Global recruitment
« Reply #4 on: February 23, 2007, 01:19:23 AM »
Hi Ms Stress

I'm not sure what the question is exactly but as far as studies go based on what you've told us it seems that the Harvard study may be right for you. If you've contacted them they will guide you and ask appropriate questions regarding their study. Of course any study does need documentaion such as date of exposure based on a HIV positive test result. Also, blood work over time will say what your t-cell and viral load levels have been in conjunction with your postive test result.

There are dozens of studies out there. I began with different Google searches. I narrowed my search to LTNP as it best fit my experience, yours may be different. Cast a wide net and see what you find. I also contacted MANY people by e-mail and phone, that may work for you. It took a long time (years) for me to find a study. It may go more quickly for you.

Aside from Harvard you might search the NIH Clinical trials to see if you might qualify for any study there. It's frustrating I know but in the end I spent many hours on interent searches. You may ask your HIV Dr. if he/she knows of any studies you may qualify for.

I really commend you for you efforts at stepping up to particpate in research. It is because of research that we have healthier and longer lives as people affected by HIV/AIDS, at least those with access to Doctors and medications. People in second and third world countries and the poor do not, I'm sorry say, fair so well.

I hope this has been helpful !

Cheers
Paul

Offline bobino

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  • Posts: 264
Re: Long Term Non Progressor study - Global recruitment
« Reply #5 on: February 23, 2007, 01:34:12 AM »

Hello again, Ms Stress,

I'm not sure if my earlier post was clear concerning Dr. Levy's study.  You don't have to have had 10 years of viral suppression to be in the study.  I've only been infected since 2003 or so, and I'm in the study.  What you do need is either a very low or undetectable viral load that you've maintained over, I think, two years.  That's all.

The 10-year period has to do with Levy's particular definition of "elite controller."  He reserves that particular term for people who successfully suppress the virus without medication for 10 years or more.  (Not sure what, if anything, he calls the rest of us.)  He has a number of people in the study who meet his definition.  He's following people like me to see whether there are more out there.  Will I be one of the lucky ones like OzPaul and Zeph and still have an undetectable or inconsequential viral load after 10 years?  I don't know.  So for now I have a date with Dr. Levy every two months until he tells me to stop showing up, which I hope he never does.

I agree with OzPaul that you should try to participate in research if you can.  It's the only way that we'll ever find ways of treating or (dare I hope?) curing this disease.  Trying to find studies can be frustrating.  I've been looking high and low for a study involving people like me who aren't on meds but who have lipodystrophy.  I'm going to keep trying, though, because I really do think it's the right thing to do.  Besides, we, the "virally enhanced," have every interest in seeing research progress.

Best of luck to you.

John

 
Suivons les rivières
Gardons les torrents
Restons en colère
Soyons vigilants

Offline ms_stress28

  • Member
  • Posts: 8
Re: Long Term Non Progressor study - Global recruitment
« Reply #6 on: February 23, 2007, 07:39:32 PM »
Best of luck to you as well !!! Please keep me in mind if you come across any news, I'll do the same.

Rachel at partners has contacted me already for my doctors info- So I shall keep you posted


Thanks again

Stress
-Stress

Offline OzPaul

  • Member
  • Posts: 410
  • a very blessed 29 year ltnp
Re: Long Term Non Progressor study - Global recruitment
« Reply #7 on: February 23, 2007, 09:34:34 PM »
Hey Ms Stress

That sounds like good news about the Harvard study  ;D Please do keep us posted.
If I come across any studies that look might  be a good fit for you, I'll be sure to let you know.
Thanks again for stepping up and participating, every single person can make a difference.

Cheers
Paul

Offline ministeev

  • member
  • Posts: 2
Newly Named Long Term Progressor
« Reply #8 on: March 21, 2007, 04:59:36 PM »
Well, I thought I would log on and share my story.  I received information about this forum from Rachel Rosenburg who is involved with the study at Harvard. 

Back on February 8, 2007, I went in to my doctor for an annual physical which consisted of an HIV test.  When the test came back positive, I was of course like everyone else, FLABBERGASTED. 

He immediately referred me to a specialist here in Fort Worth, TX where I live and I was in on February 19 giving my 10 vials of blood for all my tests. 

Waiting the three weeks for the result was excruciating.  However, when my results were shared with me (the day before my birthday) on March 13, the doctor seemed to be flabbergasted himself.  All of my bloodwork came back normal.  CD4/CD8 ratio was normal.  T cells were in the high 700's and my viral load was "undectable".  I of course have not had any signs of illness.  The doctor stated that he wanted to take the ELISA/Western Blot tests over again and a lower level viral load test due to the fact that the VL test they did was 400 copies or less.  This time he was going to do a test of 50 copies or less. 

Yesterday (March 20) he called me and stated that my WB came back positive, but they still could not detect any viral load of 50 copies or less.  He stated that he shared this information with some other doctor associates and they felt that I was an "elite non-progressor". 

I was pretty amazed.  I totally expected to have him say "Your t-cells are here and your viral load is here, so you need to take this for the rest of your life". 

I'm pretty blown away by this but also grateful.  I would love to connect with any of you and talk to you on the phone if you feel comfortable doing so.  My doctor has put me in touch with the study in MA and I just got off the phone with her a few minutes ago. 

I'm just glad that a "positive" (no pun intended) result came of this and that I can participate in a study that may find a cure for this some day. 

Blessings to all of you. 

David

 


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