I have been highlighting it for the last two das in other posts but today I noted that nearly all the major newspapers around the world are publishing this news as a major breakthrough. Although we should not attach very high hopes of cure with this discovery, however we can easily say that this is the most exciting and hope giving news since last few decades.
Look at the head lines of the major sources of news around the world
CNN is calling it "‘A new chapter’ in Parkinson’s"
I do not get why is this such a big news?
Yeah. This is so nothing. Frightening.
because MJFF wants to say they are doing something with all the donations money
Actually their doing S..t
That's how it reads to me with the oversell.
What's happening with the neuron injecting - it worked except for the tumors.
Anything you'd like to see as the focus of research?
This is indeed a very big news. Why? Please listen to the webcast on 20th April
where is the webcast
Webinar Details
Date:
Thursday, April 20, 2023
Duration:
1 hr
Time:
12:00 pm ET
It's big because early detection is a benefit and anything that gets closer to drilling down to root causes is exciting. In this case understanding what causes abnormal alpha-synuclein gets you closer.
IMHO, "understanding what causes abnormal alpha-synuclein" is virtually the holy grail.
Let's hope so because cracking it might mean relief for all neurological disease sufferers. But also, early detection will surely help slow progression. I don't understand the negativity shown by people who presumably have a connection to PD (why else would they be on here?) perhaps they could explain?
My question would be, how does early detection delay or reverse progression? None of the drugs available do that...
I think that should be: "none of the drugs (currently) available"
Yes. Currently. Nothing like the present..🙂
Exercise and diet can still do that
Again, adjusting how much and what diet is the issue. Not everyone is the same...
Could I first qualify my answer by stating I am not a medical man and certainly not a PD expert!
But logically I'd have thought early detection will mean very much fewer Dopaminergic neurons will have been lost than if the diagnosis followed after a few years of the condition doing it's worst. I assume the drugs currently available SLOW not DELAY the progression. Coupled with the Melatonin study on mice and the possibility of Dr Sackner-Bernstein's theory based on the same proposal of excessive Dopamine with the Dopaminergic neurons getting funded, as the partner of a newly diagnosed PD sufferer it maybe wishful thinking but I think it's realistically an encouraging development.
What's you angle?
Why would it help other neurological sufferers? This is a PD cause.
Negative: People want cures. This is a long way from creating a cure. It's not even a blood test yet. It was oversold so it gets a disappointed reaction.
It’s not a new wonder drug or news about an OTC supplement that stops PD progression. It’s a painful test that measures ASN. We don’t even know for sure that ASN is the right target to measure at this point. It is “potentially” a huge breakthrough if ASN is the right target but dividends are probably some years away given that we will still have to wait years to move a drug from identification to the pharmacy. As has been the case with PD for a long time. For those with advanced PD, probably not much to see here. Maybe I’m wrong.
On reflection. It might help test non pharmaceutical interventions. Light therapies and so on, the vibra gloves maybe…I’m still underwhelmed.
You made a great point! The test could be used to validate treatments. In fact, this curcumin trial actually did measure the effect on A-Syn in the skin (curcumin helped): healthunlocked.com/cure-par...
I wonder if there is any scope for this test in the Ambroxol trial? Part of the proposed mechanism of Ambroxol is clearing clumps of alpha-synuclein out of nerve cells. Way beyond my understanding if anyone with more knowledge wants to weigh in. 🙃
Should ask this question in their coming webinar
In Parkinson's, a build up of a troublesome protein called alpha-synuclein is often seen in the brain tissue. It's thought that ambroxol may help improve the body's ability to clear away these clumps of alpha-synuclein and prevent damage to brain cells.Jan 10, 2023
The Asyn-SAA test could be used in the Ambroxol trial to confirm that the volunteers have PD (or DLB or MSA).
They are just starting that trial. They were using spline fluid in the phase 2 (I just read), so maybe they'll add this in and be able to run the test for non-progression more quickly? ??? I'd like to hope.
i am optomistic. It has a greater than 90 % success rate, now if John Pepper could be tested we could be more certain if he has PD or not.
The aim was not to do drug development but to find a biomarker which is an essential tool for monitoring disease progression and intervention effectiveness.
now we have a tool for assessing whether the OTC’s (like B1) actually do delay progression or it is all hype. How else do you separate the wheat from the chaff?
"an essential tool for monitoring disease progression and intervention effectiveness"
My understanding (from the articles below) is that it will be a few years before the new test (Asyn-SAA) can do either of those. The CSF version, tested on the PPMI dataset, confirmed a diagnosis of PD (or DLB or MSA) with 93% accuracy. In a few years there should be a blood-test version available.
I'm hoping there's a path here where the UCB drug to unfold the ASN that's in the Prism study, will work and that this will speed up ability to prove it, to get it to market. (Is it Prism?)
That's my outlier optimism. I'm underwhelmed and not going to benefit from early detection.
I think it's a great thing to have an objective biological test for PD - but unfortunately the test is not scaleable - that is - you have to tap the spinal fluid! BUT - it is still very interesting that this build up of AS can be detected BEFORE any motor symptoms, tremors or loss of smell. And what so many people don't realise is that these alpha-synuclein proteins have been shown to originate in the gut years, and sometimes even decades, before they are identified in the brain (or spinal cord). Perhaps this explains why, for many people the first symptoms are constipation, sleep disturbances and loss of smell....not tremours or rigidity.
Im hoping it brings research focus back to the gut - digestion - and understanding better how to avoid the building up of AS in the first place - and not necessarily through drug interventions only.....
More on the gut - I still think light therapy (PDCare Laser) applied at home on the gut is perhaps one way to prevent and reduce AS build up. Still quite small clinical trials, but many users experiencing improvements after gradual/consistent use 3 x a week for 6+ weeks...
can you share the unit you are referring to? Thank you!
How do you apply a laser to the gut? Where's this being tested? That's a short enough time to make self testing it realistic.
The Asyn-SAA test detects the presence of alpha-syn aggregates in the CSF and so is able to confirm (or not) a diagnosis of alpha-synucleinopathy (PD or DLB or MSA).
This achievement is significant and is independent of whether or not reducing alpha-syn aggregates in a PwP will benefit his/her PD.
Are there any studies yet that indicate reducing ASN reduces PD symptoms?
Forgive me if I’m asking a dumb question, but I was told that only about 10% of PwP’s have PD that is caused by genetics, all others are environmental. Is that true in this new breakthrough and/or does it matter? I assume it will help understand what causes PD. 🥊
The Asyn-SAA test detects the presence of alpha-syn aggregates in the cerebrospinal fluid (CSF), independent of whether the PD was caused by genetic or environmental factors.
The test will help researchers to study PD in its prodromal stage (before symptoms appear), and probably even earlier then that.
what about the skin biopsy test isn’t that over 90% accuracy and less invasive? Syn One test) Is the CSF test more accurate ?
Estimated Study Completion Date: August 31, 2023
Synuclein-One Study
I thought the smell lose tests were also very effective at identifying too?
I have had both the SynOne biopsy and a spinal fluid sample both as part of trial. I would go for a spinal fluid sample ANY day but that is just one persons experience. To the untrained eye, both tests seem to be based on the same principles, using fluorescing reagents to bind to clumped alpha synuclein.
One of the CENTRAL problems that these tests help to solve is that current diagnostic accuracy is terrible "a diagnostic accuracy of only 58% (41 of 71) for parkinsonian subjects with an initial, early diagnosis of PD." ncbi.nlm.nih.gov/pmc/articl... .
If you do PPMI or other online data studies, that is why one of the first questions is "do you still have a diagnosis of PD?"! If you have been in the questionable diagnostic space it is a horrible, expensive, exhausting, demoralizing experience.
For potential drug development it is a game changer because if a company is doing drug trails on drug naïve subjects the potential to have almost half of your sample possibly NOT have PD really messes with the statistics. Drugs that have small effects need huge populations to make sure they can figure out results.
I hope that both the SYN One and new tests work and that competition keeps pricing out of the stratosphere.
Onward..
Wondering if this test can measure the rate of progression as well
The report that I got quite recently from the SynOne biopsy trial did not make a diagnostic decision. It just stated that phosphorylated α-synuclein was found. Interestingly only one of my 3 biopsy samples was positive. There was no quantitative assessment, that the sample fluoresced xyz amount or anything like that.
I imagine that if these test are accurate and are well adopted it might be possible to do a longitudinal study that correlated some quantitative measure of α-syn to disease progression. I did not see any evidence of that in my data. Looking forward to the August paper.
Perhaps a more immediate possibility is that if PD is a disease spectrum or has multi factorial etiologies that can be treated individually, these tests can enable individualized treatments. Hopefully some of these can be with existing meds!
See also academic.oup.com/brain/arti...
and
pubmed.ncbi.nlm.nih.gov/348...
IF I read these correctly the articles suggest that there is debate over if quantitative measures in the new assays are predictive of UPDRS motor scores but probably are with MSA.
I'm not so excited yet. It's could great news for the patients who will be symptomatic in 30 years.
It's from spinal fluid. So no idea if it can be done in a simple blood test yet.
Detection helps research, speeds up by being able to quantify quickly. But the research still needs to happen. I'm not excited about early diagnosis. I'm already diagnosed! I want current treatment to stop progression and reverse it!
Calling it a game changer and a breakthru available way to test, is overselling a bit.
But IF IF it winds up proving the ASN theories, that will be very helpful compared to the vague world PD research is in right now.
wow
They made a big deal if this?
Is MJF in a healthy state of mind?
Does he really believe in what he says?
So you diagnose the PD and then what the hell you do?
Come on MJF, be sensible, be responsible for all the donation money spending on yourself and countless employee, For nothing...........
Do something
We need Cure
Not fake news
See also this recent PNT article:
parkinsonsnewstoday.com/new...
That does change the world of research, at least on the ASN molecule if they can detect it!
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