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UK HIV CNS research study - patient involvement required

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Garry Brough
Steering group
Posts: 160
UK HIV CNS research study - patient involvement required
Posted on: November 15 2010, 02:56 pm

Dear ALL

Please find below a request for patient participation in the design and implementation of a research project. Contact details are included at the end.

All the best
Garry

We are a team of researchers based in Liverpool that brings together 3 departments:
1) The Liverpool HIV pharmacology group that have developed the widely used HIV drug interactions website: http://www.hiv-druginteractions.org/
2) The Liverpool Brain Infections Group lead by Prof Tom Solomon leading UK research into viral infections of the brain, both in the UK and in tropical environments. http://www.liv.ac.uk/neuroscience/brain-infections/
3) The Wolfson Centre for Personalised Medicine, a major research centre looking at how individuals handle drugs differently.  http://www.liv.ac.uk/pharmacogenetics/centre_for_personalised_medicine
There are also collabarators in major London HIV centres; St Marys and UCL. The study is funded by the Medical Research Council.
 
As you may be aware, there is increasing evidence that HIV affects the brain. The brain is a very sensitive organ and the body keeps it well protected from substances it does not recognise. As a result HIV drugs have difficulty getting into the brain and often get pumped back out if they do enter. In fact levels of anti-HIV drugs can be as little as 1% of that in the blood. As a result large numbers of HIV positive individuals can have minor problems with thinking and memory despite treatment. Some even have HIV growing in the brain despite it being fully suppressed elsewhere in the body.
 
There is a lot of variation between individuals. Some have high levels in the spinal fluid while others have very low levels. It is not know why some people are effected and some are not. It is likely that these differences are due to changes in DNA, particularly genes that make proteins that transport drugs in and out of the brain.
 
In order to investigate this we need to collect spinal fluid from HIV positive individuals across the UK. We aim to do this in 2 different studies:
 
   Study A: National CSF Biobank study
 
In this study we will collect an extra sample of spinal fluid from HIV positive people having a lumbar puncture for another reason. For example, people may have a lumbar puncture to investigate a headache or exclude an opportunistic infection. We will not do lumbar punctures just to get samples for our research, but will collect a small extra sample when one is being done anyway.
 
We aim to do this across every major HIV unit in the country and collect many samples over the next 3 years. We will look at how the drug levels vary in the spinal fluid and look for genes that cause these changes. The ultimate aim is to develop simple genetic tests that can predict how a certain individual will handle a certain drug. These tests could be used to tailor medication to that individual to stop HIV from effecting their brain in the long term.
 
   Study B: The Central Nervous System as a Sanctuary Site for HIV
 
This study looks at patients who have detectable HIV in the blood despite treatment. In some cases there is a reason for this, for example the person may not be taking their drugs regularly or the HIV virus may have become resistant. In many cases however it remains unexplained. This study looks at whether a proportion of these cases can be explained by HIV continuing to grow in the brain and spinal fluid.
 
To do this we will offer a lumbar puncture to people that have HIV in the blood despite treatment. This is different to Study A as they would not otherwise be having a lumbar puncture. We will be able to tell that person and their doctor if they have HIV continuing to grow in the brain and spinal fluid, and how much is there compared with the blood. We will go on to look at the drug levels and the DNA to see if we can determine why this is happening.
 
We are currently setting up a website with all the relevant information about both studies. This website will be aimed at doctors, patients and the public. The domain name will be www.liv.ac.uk/UK_HIV_CNS_study (it is likely to be going live in the next couple of months).
 
We would be very keen to have involvement and input from patients and patient groups. In particular any comments or suggestions on study design or implementation, and any help they can provide increasing awareness about the study in the HIV community.
 
Please let me know if I can provide any more information.
 
Many thanks,
Sam Nightingale
07890 612 316
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Simon Collins
Global Moderator
Posts: 651
Re: UK HIV CNS research study - patient involvement required
Reply #1 on: November 15 2010, 03:19 pm

Thanks - looks interesting.
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Garry Brough
Steering group
Posts: 160
Re: UK HIV CNS research study - patient involvement required
Reply #2 on: November 15 2010, 03:39 pm

By the way, the contact email address for communicating with Sam on this is:  s.nightingale@liv.ac.uk 
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john@tcell.org.uk
Member
Posts: 136
Re: UK HIV CNS research study - patient involvement required
Reply #3 on: November 15 2010, 06:16 pm

Thanks for this.
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