A researcher into PD is particularly interested to know if having to have a lumbar puncture http://en.wikipedia.org/wiki/Lumbar_puncture at the end of a particular clinical trial would stop you taking part.
As a volunteer representative of PD sufferers and other interested parties on the Cure Parkinson's Action Group I would be interested in your views as to what would motivate you to take part in clinical trials and what would put you off. Researchers frequently report that a major obstacle is recruiting patients for trials.
It would be great to hear your views on the general question about taking part and the specific question about the lumbar puncture.
Thanks
Whilst I was happy to take part in a 6 month Stage 2 drug trial involving amongst other things regular blood tests, I would draw the line at lumbar punctures 
Whilst I would be very reluctant to have a lumbar puncture at the end of a clinical trial, I am extremely reluctant to have PD.............so it would depend on the nature of the trial.
I'm with bartobob on this one
I would find a lumbar puncture scary and I would think hard before taking part in a drug trial. I would grit my teeth and do either/both to push Parkinson's research forwards.
EF
I would find a lumbar puncture scary and I would think hard before taking part in a drug trial. I would grit my teeth and do either/both to push Parkinson's research forwards.
EF
Research Summary
Parkinson’s Disease (PD) is a common cause of disability in later life. Our understanding of what causes PD is limited and there are no treatments which slow the progression of the disease. This multicentre study, funded by a major award (£5 million) from Parkinson's UK, will recruit individuals from the Thames Valley with Parkinson's Disease (PD).
Participants will be invited to undergo a series of assessments to confirm the diagnosis of PD and to give a blood sample for DNA and serum protein analysis. DNA from agematched controls and relatives of patients with PD will also be collected because it is necessary to compare such findings with DNA from people who do not have PD in order to understand the significance of any genetic variation or biomarker that we identify.
The Oxford Parkinson’s Disease Centre is a team of scientists and clinicians who will work together to identify the key biological pathways in the early stages of PD using blood and other biosamples from this study. Selected patients, relatives and controls will be invited to undergo more detailed investigations including a brain scan, lumbar puncture, and skin biopsy. Samples will be analysed to identify new tests (biomarkers) the ultimate aim of which is to predict whether a person may go on to get PD. These genetic variations will then be studied using stem cells, which will be prepared from skin samples from individuals with PD. Brain Magnetic Resonance Imaging (MRI) will be used to try and identify the earliest changes in the brain in PD. Uncovering the mechanisms underlying the early stages of PD will enable improved diagnosis and generation of better experimental models for identifying therapies to treat the disease before it causes severe symptoms.
Parkinson’s Disease (PD) is a common cause of disability in later life. Our understanding of what causes PD is limited and there are no treatments which slow the progression of the disease. This multicentre study, funded by a major award (£5 million) from Parkinson's UK, will recruit individuals from the Thames Valley with Parkinson's Disease (PD).
Participants will be invited to undergo a series of assessments to confirm the diagnosis of PD and to give a blood sample for DNA and serum protein analysis. DNA from agematched controls and relatives of patients with PD will also be collected because it is necessary to compare such findings with DNA from people who do not have PD in order to understand the significance of any genetic variation or biomarker that we identify.
The Oxford Parkinson’s Disease Centre is a team of scientists and clinicians who will work together to identify the key biological pathways in the early stages of PD using blood and other biosamples from this study. Selected patients, relatives and controls will be invited to undergo more detailed investigations including a brain scan, lumbar puncture, and skin biopsy. Samples will be analysed to identify new tests (biomarkers) the ultimate aim of which is to predict whether a person may go on to get PD. These genetic variations will then be studied using stem cells, which will be prepared from skin samples from individuals with PD. Brain Magnetic Resonance Imaging (MRI) will be used to try and identify the earliest changes in the brain in PD. Uncovering the mechanisms underlying the early stages of PD will enable improved diagnosis and generation of better experimental models for identifying therapies to treat the disease before it causes severe symptoms.
This is an interesting question - volunteers have put together a short survey to help out a particular researcher.
If you'd like to add your views to the survey, it's at https://www.surveymonkey.com/s/F9GQ5YL
Thanks!
Emily
Research team
If you'd like to add your views to the survey, it's at https://www.surveymonkey.com/s/F9GQ5YL
Thanks!
Emily
Research team
the survey does not really address the question.
Any potential volunteer attempts to quantify the upside and downside of any drug trial ie is it dangerous, and will it benefit the volunteer = risk/reward
Unless the trial can clearly state WHY the lumbar puncture is absolutely necessary ( rather than 'lets add one of those to the tests' )it will deter volunteers.
Any potential volunteer attempts to quantify the upside and downside of any drug trial ie is it dangerous, and will it benefit the volunteer = risk/reward
Unless the trial can clearly state WHY the lumbar puncture is absolutely necessary ( rather than 'lets add one of those to the tests' )it will deter volunteers.
Hi Krugen68,
The trial you're talking about in Oxford is just one trial that involves a lumbar puncture.
The researcher who has approached us is interested in starting a drug trial, and wanted to get an idea about patient's views on undergoing this type of procedure for research.
Like any study, if it started there would be a full study information sheet to provide details about the study including possible risks and benefits. Participants would also have the opportunity to ask questions.
Thanks very much for your comments. The survey has had many responses already, which will be useful to the researcher.
The trial you're talking about in Oxford is just one trial that involves a lumbar puncture.
The researcher who has approached us is interested in starting a drug trial, and wanted to get an idea about patient's views on undergoing this type of procedure for research.
Like any study, if it started there would be a full study information sheet to provide details about the study including possible risks and benefits. Participants would also have the opportunity to ask questions.
Thanks very much for your comments. The survey has had many responses already, which will be useful to the researcher.
I would have to consider any request for involvement in any
drugs trial and again any involvement with lumbar punch procedures.
Take the 2nd part 1st. :- I do not react to a] alcohol, b] analgesic
c] anaesthetic (not always) d] sedatives
This is a condition, I was told had varying degrees of effect, I was
told by my dentist that could effect up to 4 in 1000 people. Some
only slightly others much more. If you were to start the procedure
without securing an effective pain control and I could be in serious
trouble. Any volunteers need to be checked if they might be effected
by this condition. Guess what anaesthetists do not always like me.
Now the 1st part :- Any drugs I am given seem to take time to become
effective and I am already taking 13 different tablets, capsules,
sachets every day which other sufferers may have more varieties to cope
with. Being slow on the up-take does not help
drugs trial and again any involvement with lumbar punch procedures.
Take the 2nd part 1st. :- I do not react to a] alcohol, b] analgesic
c] anaesthetic (not always) d] sedatives
This is a condition, I was told had varying degrees of effect, I was
told by my dentist that could effect up to 4 in 1000 people. Some
only slightly others much more. If you were to start the procedure
without securing an effective pain control and I could be in serious
trouble. Any volunteers need to be checked if they might be effected
by this condition. Guess what anaesthetists do not always like me.
Now the 1st part :- Any drugs I am given seem to take time to become
effective and I am already taking 13 different tablets, capsules,
sachets every day which other sufferers may have more varieties to cope
with. Being slow on the up-take does not help
I have volunteered for a (the?) long-term, Oxford based research to chart the progress of PD but have drawn the line at a lumbar puncture - it really seems quite invasive. I agree with Krugen that I would have to be given a very good reason to consider it. I have also declined a scan but might be persuaded if I had any real information about it. For example someone recently told me you could listen to music while you were in there.
No-one is puncturing my spine and sucking out the fluid - I saw the Predator movie thank you.
As for the MRI, I had one this week. I read up on it beforehand and was as prepared as I could be. I actually had two, one on the brain and one on the neck.
They do play music in the scan room, but you won't hear it above the buzzing, clunking, knocking and clanking of the scanner. You lie flat on your back with your head in a shaped block and a frame over it to stop your head moving. At worst it is uncomfortable and I felt dizzy afterwards, but it is painless and if you can relax a bit it's over soon enough.
Although the bed/table moves into the scanner unit a bit back and forth it is fitted with a series of mirrors so you can always see outside the unit. Having an external reference point helps avoid claustrophobia.
Strangely enough, I'd have no problem being a guinea pig for new drugs either. Just no way would I have an unnecessary intrusive procedure.
As for the MRI, I had one this week. I read up on it beforehand and was as prepared as I could be. I actually had two, one on the brain and one on the neck.
They do play music in the scan room, but you won't hear it above the buzzing, clunking, knocking and clanking of the scanner. You lie flat on your back with your head in a shaped block and a frame over it to stop your head moving. At worst it is uncomfortable and I felt dizzy afterwards, but it is painless and if you can relax a bit it's over soon enough.
Although the bed/table moves into the scanner unit a bit back and forth it is fitted with a series of mirrors so you can always see outside the unit. Having an external reference point helps avoid claustrophobia.
Strangely enough, I'd have no problem being a guinea pig for new drugs either. Just no way would I have an unnecessary intrusive procedure.
I have volunteered for a few clinical trials and have really enjoyed the experience. All the research people have been very switched on, informative & delighted to answer questions about the trials and any scans or invasive procedures in particular.
On Eileenpatricia's point about scans - I have been scanned twice. The first was for diagnosis and the second for research. In each case I had headphones so that I could hear music and the scanner operator, I had a 'get me out' switch in my hand and could talk to the operator. The diagnostic scan involved staying still for 30-40 minutes and listening to my own choice of music.
In the research scanner I could see a computer screen via a mirror and was asked lots of questions as part of the experiment.
In every trial that I have been part of it has been very clear that I could withdraw at any time without needing to give a reason.
EF
On Eileenpatricia's point about scans - I have been scanned twice. The first was for diagnosis and the second for research. In each case I had headphones so that I could hear music and the scanner operator, I had a 'get me out' switch in my hand and could talk to the operator. The diagnostic scan involved staying still for 30-40 minutes and listening to my own choice of music.
In the research scanner I could see a computer screen via a mirror and was asked lots of questions as part of the experiment.
In every trial that I have been part of it has been very clear that I could withdraw at any time without needing to give a reason.
EF
I was all set to do the recent Oxford study. But then I found out about the lumbar punctures and withdrew.
To me taking bloods is every day. Lumbar punctures are not.
Im a single parent of young children and I regarded the risk as unacceptable in my circumstances.
To me taking bloods is every day. Lumbar punctures are not.
Im a single parent of young children and I regarded the risk as unacceptable in my circumstances.
Thanksfor the info. Chalong and Elegant Fowl - I am bit more inclined towards the scan now. I would really like to fully participate in the project I am signed up for.