Parkinson's Disease Tulip


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Old 05-18-2015, 07:24 PM #1
zanpar321 zanpar321 is offline
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Originally Posted by lurkingforacure View Post
I wonder if they have addressed false positives with this? We all know that people who have been diagnosed with PD and been taking PD drugs for years, usually decades, often have no evidence of alpha-synuclein clumps in their brains on autopsy, which means that they are definitively ruled out (post-mortem) as ever having had PD. Yet many people have these same alpha-syn clumps on autopsy and never had a symptom of PD while alive.

What if someone has the "PD blood marker" with this test but no symptoms of PD? That could sure label someone in a bad way. Imagine having a routine blood test and being erroneously told you had PD!

On the flip side, I guess that's a lot better than being told you have PD and you really do
The studies to test this of course need to be double blind tests where the lab folks have no idea who is who and all they do is measure alpha nuclein and come up with a decision as to whether the patient has PD or not. This data would then result in accuracy rate based on actual patient data. If I understand the data so far, folks that have excess alpha nuclein often will end up with PD but just don't know it yet. This data (once accuracy is determined) will allow folks to be treated before symptoms even occur! I think this is the way things will be in the near future!
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Old 05-18-2015, 09:03 PM #2
lurkingforacure lurkingforacure is offline
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The studies to test this of course need to be double blind tests where the lab folks have no idea who is who and all they do is measure alpha nuclein and come up with a decision as to whether the patient has PD or not. This data would then result in accuracy rate based on actual patient data. If I understand the data so far, folks that have excess alpha nuclein often will end up with PD but just don't know it yet. This data (once accuracy is determined) will allow folks to be treated before symptoms even occur! I think this is the way things will be in the near future!
So that raises another question for me....with what exactly are folks going to be treated "before symptoms even occur"? nothing slows or even halts progression, so all a test would do is tell people they are going to get PD at some point, but there are no treatments yet to keep that from happening. Is this good?

To me, this raises the same issues as genetic testing. Ex: some people want to know whether they have a 25% or higher risk for Alz. (fill in the blank disease), others don't. If there is no cure, and nothing we know of that can prevent it, many people would find that knowledge a burden. It could ruin their lives before they even had symptoms! I am not sure this is an improvement.

Additionally, I fear these types of blood tests could be used by insurance companies (such as disability, long-term care, life), maybe employers and others to weed out those at risk of getting XYZ disease, or charge them more for this or that before someone even has any symptoms. What if your blood test shows you will get PD, and you start getting charged much more for many things, maybe even discriminated against, but you don't develop symptoms for 25 years. How would society protect against this?
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Old 05-18-2015, 09:23 PM #3
zanpar321 zanpar321 is offline
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Originally Posted by lurkingforacure View Post
So that raises another question for me....with what exactly are folks going to be treated "before symptoms even occur"? nothing slows or even halts progression, so all a test would do is tell people they are going to get PD at some point, but there are no treatments yet to keep that from happening. Is this good?

To me, this raises the same issues as genetic testing. Ex: some people want to know whether they have a 25% or higher risk for Alz. (fill in the blank disease), others don't. If there is no cure, and nothing we know of that can prevent it, many people would find that knowledge a burden. It could ruin their lives before they even had symptoms! I am not sure this is an improvement.

Additionally, I fear these types of blood tests could be used by insurance companies (such as disability, long-term care, life), maybe employers and others to weed out those at risk of getting XYZ disease, or charge them more for this or that before someone even has any symptoms. What if your blood test shows you will get PD, and you start getting charged much more for many things, maybe even discriminated against, but you don't develop symptoms for 25 years. How would society protect against this?
Yikes! So many questions. I just want to be done with PD any way that happens is OK with me. I think accurate blood testing would speed research!
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