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Research Why or why not?

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Hi All,
Happy Holidays.  I am researcher new to the field of HIV/AIDS.  I am trying to get a better understanding what some of the reasons are for patients choosing to do research and reasons why some chose not to.  I figured asking the patients themselves would be the best way.  Any feedback would be great.  Thanks and Happy New Year!!!!!

Hi Research

If you read FIVE MORE PARTICIPANTS you'll get an explanation as to why I do. The next NIH study for which I must wait six months in between in order to participate will require a muscle biopsy. Just like ordering chicken, I get to choose...wing or thigh.


Hi Research

Just to clarify something, I do not consider myself a 'patient' in the research I'm in but rather a 'participant'.

If you go to the thread 'You may be a LTNP too' you'll read about some of us here and our motivation factors in our decision to participate or not. LTNP stands for Long Term Non Progressor. I've been positive for 25 years and blessedly unaffected by the virus (in a medical sense).

I participate because as a so-called 'elite controller' LTNP I feel it is important to try and help researchers in their quest to develop a vaccine or cure for HIV/AIDS. I'm involved in three studies currently. In addition to the NIH  LTNP study and the Harvard 'elite controller' study, I participate in on going LTNP research at the University of New South Wales in Sydney. I am an American living in Australia. I visit each institution 1 to 2 times per year.



Hi everyone,
First I would like to say thank you for responding.  Second I want to apologize if I offended anyone by referring to research participants as patients.  As stated by Emeraldize I used the word "patient"-- because if one has HIV they are a patient under a doctor's care somewhere and opting to participate in research. Yes!  Also because many times I have come across individuals referring participating in research as being "guinea pig".  And here I have to explain that you are not a "guinea pig" if you are in a trial.  That in research we have patients with conditions seeking other alternative treatment, not "guinea pigs"  But again I do apologize if I offended anyone.  You are right you are a participant in a trial.

As I stated in my first message I am trying to get a better understanding why some make the choice to participate and why others don't.  It so easy for me to go out and try to encourage people to join a trial.  But the only way for me to do my job better is to truly understand what the barriers are keeping people from joining.  And as I stated the best way to do that is to ask and here I am. 

Emeraldize, yes my organization is recruiting for trials.  But we are located in NYC so I am not sure if that makes a difference.

Thanks again 


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