POZ Community Forums

Meds, Mind, Body & Benefits => Research News & Studies => Topic started by: zephyr on March 05, 2008, 08:40:14 am

Title: New Website Launched for HIV Controller Study
Post by: zephyr on March 05, 2008, 08:40:14 am

For those folks who follow the story on LTNP/Viremic/Elite Controllers, a new website has been launched by Dr. Bruce Walker's group in
Boston (Partners AIDS Research Group) that presents a detailed explanation about who is eligible for the study, why they are of interest,
and an update on the state of the research. It may serve to clear up some of the confusion of the last three years that has been prevelant
about this unique group of individuals in the world who control HIV naturally.

Under the News Releases tab, Massachusetts General Hospital published a Press Release yesterday, March 4th, about a very generous grant
of $20.5 million from the Gates Foundation to the study.

http://www.hivcontrollers.org

I'd like to thank each of you involved in this study for your contributions, and for those of you who may be interested in joining, you now have
a more user-friendly site to gain insight and education.

My best....

Title: Re: New Website Launched for HIV Controller Study
Post by: Funkengruven on March 06, 2008, 01:10:24 pm

Zephyr (or anyone else enrolled in this particular study),

I've been positive for about 2 years.  From the time of my diagnosis, my CD4s have increased from about 550 to almost 900 and my viral load has been in the 150 - 1200 range.  Also, I am not on meds.  I do find this study and the thought of giving something back to my community very appealing.  I don't live in the Boston area, but it seems that they could work something out with my doctor in regards to obtaining a blood sample on my next draw.  My question, and maybe I just missed this while going through the Web site, is this a one time thing, or would they like multiple samples over time?  Also, is a blood sample all they need or is there something else they would require or need of me?

Thanks for any input.

Title: Re: New Website Launched for HIV Controller Study
Post by: OzPaul on March 06, 2008, 05:23:50 pm

Hi Funken

I've  been in this study for four years now.

It is my understanding that for most people enrolled in the study, a one time blood draw of about 10 vials is all that is needed. Generally this can be done at your Dr's office and then shipped to Boston. The study has systems in place to assist your doctor with this.

Some people have given whole blood donations in Boston and some are followed over time. I've done both, though I'm not sure what the criteria for that is.

I was tested poz in '85 though likely became infected in '81. I'm considered to be in the subgroup of the study sometimes termed 'elite' controller. There are a number of other forum members who are in this study.

If you have further questions about the study, you can use the contact e-mail and/or phone number listed on the web page for the study. You might also ask your Dr. to contact them.


There is another study that you may qualify for if you are interested. It is at the NIH (National Institutes of Health) in Bethesda, Maryland. Here's a link with info on the study and contact info for them. I'm also in this study.

http://www3.niaid.nih.gov/healthscience/clinicalstudies/HIVandInfectious/HIVstudies/LTNP.htm

It's termed a Long Term Non Progressor (LTNP) study but you may qualify for it. Again, there are several forum members who are in this study  This one involves traveling to Bethesda. If you have any questions, please feel free to PM me.

Thanks for your interest in being involved in studies. Each person does make a difference in the research efforts !

I hope this helps. May your good health continue.

Hey Zephyr, Good to see you back here ! Thanks for posting this  :D

Cheers
Paul

Title: Re: New Website Launched for HIV Controller Study
Post by: J.R.E. on March 06, 2008, 07:27:43 pm

Hello Zephyr,

Thanks for posting this. There are, also a lot of good links within your link to check out.


Thanks------Ray

Title: Re: New Website Launched for HIV Controller Study
Post by: emeraldize on March 06, 2008, 08:18:44 pm

Hi Funken,

In the last few years, I've contributed three times--all long distance.

They FedEx the vials, consent form, nurse at my clinic does the draw, ships them back to jibe with the study's lab ship out day(s) of the week.

And, if I recall correctly, the study then sends $100 (per draw and unrestricted) to the clinic. Nope, it doesn't go to the participant, but it's another feel good because in my case, the clinic puts it toward nice things for patients.

Happy donating!
Em

Zephyr,

Thanks for citing the site. That ought to help them increase their recruitment numbers. And, they did a good job with it.

Em

Title: Re: New Website Launched for HIV Controller Study
Post by: Funkengruven on March 07, 2008, 11:35:34 am

Thanks for the replies and info everyone.  I'll shoot the researchers and e-mail and have a talk with my doctor on my next visit.