Exciting PD research news?

[fakhiuddin]

I want to have access to the studies underway, including stem cell transplantation, inducement of patients own stem cells to grow faster, invivo or exvivo, exchange of csf etc.

Thanks

f.ahmed md

[TonyWest]

Your interest and mine appear aligned. I’m rather surprised by the low-key discussion or lack of it on stem cell research. Stem cells are (relatively) big and can’t pass the blood/brain barrier, creating a delivery challenge. In contrast, Stem cell-derived exosomes are (relatively) tiny and CAN transit the BBB into the brain. When you couple this property with the enhanced growth factors that result from sourcing them from human umbilical cord (hucMSC) and the fact that they are “safer” (DNA-wise) than stem cells, I’d really like to see some serious work going on in this area.

Exosomes are now available from a number of quality sources with extensive lab-based testing for consistency, etc.

I use Sinemet and it helps (at the moment), but in the end, it’s helping with symptoms, not the root cause, whereas an exosome-based approach could not only address the root cause, but could solve the delivery problem as well.

Thoughts?

[djn]

Tony, I just learned from a fellow Parkie, that there has been significant research on stem cell therapy in Japan where a cohort of 25 folks were given stem cell replacement and all showed significant improvement, You can find more info by searching “parkinson’s stem cell japan”. I am wondering if there is a US research team that is pursuing this? Dave

[Andrew L.]

Dopamine boost directly into brain via inactivated virus. Immune modulated response attacking harmful brain protein accumulation. Effects of light and sound therapy on brain. Not exactly excited (more interested) but trying to stay positive.

[Andrew L.]

deleted coment

[Bob Hodgson]

Check out this latest research from UCSD.

https://health.ucsd.edu/news/releases/Pages/2020-06-24-One-Time-Treatment-Generates-New-Neurons-Eliminates-Parkinsons-Disease-in-Mice.aspx

 

[Andrew L.]

Thanks for sharing that Bob! Plan to  get another scientific opinion on this…

[Charles H Levin]

I was also going to post about the UCSD study (posted above by Bob Hodgson) that popped up last week on numerous health news feeds … This does appear to be very exciting news in that the researchers accidentally got mice to regenerate dopamine-producing neuron cells … all the mice recovered from their PD symptoms which never came back for the duration of their lives … When you think about the science of Parkinson’s as we know it, this might be groundbreaking …

I exchanged emails with the co-author, Dr. William Mobley. I asked how long before they can start clinical trials. He said “years.”

I would love to hear from anyone who knows more about the research trial process, the different phases and the kinds of hurdles involved, financial and regulatory that are involved.

[Andrew L.]

Was also very excited by the study, but “years” is a bit depressing. I guess there are different stages of clinical trials, and it has to go through at least 4 before being approved.Maybe they can fast track it….

[Michael R. Scott]

Bob,

Thanks for bringing this new study.

I’d read it and was going to post it here, but you beat me to it!… This could be a really BIG deal!… 🙂

[Bill Church]

Good morning all….I have recently joined this forum and would like to make a general comment about PD research.  I have been studying and teaching about the chemical causes of PD for over 30 years.  It breaks my heart to read posts like the above where patients get their hopes up when new dopamine replacement research is published.  Please review these types of studies with one very important caveat:  The animal models used in these studies (the UCSD one cited above included) utilize an acute DA-depletion model – 6OHDA or MPTP – where the toxin that killed the DA cells initially is completely absent from the brain when the new cells are introduced (either into the Substantia nigra or the Striatum).  PD in humans is associated with a progressive, CHRONIC loss of dopamine cells, meaning that something has been killing these cells for many years (often decades).  The toxic environment responsible for contributing to the cell death still exists and if you put new DA-producing cells into this environment they will most likely die also….It’s like adding more logs to the firepit, the fire gets intense for a little bit, but the fire is still there and the logs will burn away.

[Gail Dons]

Thanks, Bill for giving a realistic perspective on the research that is being done and especially why what looks so on paper or in a rat/monkey/etc does not translate as well to the person. I am encouraged by some of the stem cell studies, but they have a long way to go, esp when you realize that the newly created stem cells the frequently get the disease themselves….and I’m not sure people realize that these stem cells are injected directly into the brain ( the stereotactic surgeons are loving this!)

Another topic that relates to the lag in research is that they need more of us Parkies to volunteer to try some of these things out. Phase 2 and 3 trials take a lot of volunteers. And not all trials succeed – but these “significant negatives” are important to know. So, please volunteer for appropriate clinical trials. You can find them listed in MJF site, as well asunder”Clinical Trials.gov . Your own physician or institution may know about local ones. Remember a lot of someone’s once volunteered to take Sinemet, at their own risk!

Now, research I am interested in is the idea of Sinemet pumps. They can decrease the fluctuations in medication, allowing lower daily doses to be effective, and thus decrease dyskinesia. They can also be set to vary the dose during the day = so you get an early morning boost so you can possibly wake up ON. This research is nearing completion, and the product will probably be on the market soon. I know, because I volunteered to stick myself with 2 subcutaneous needles each day for almost a year to see how this would compare with regular PO medications – and I was pretty sure I was in the placebo group. But they need people to volunteer and risk being placebos in order to do phase 2 and 3 trials.

[rob1966]

Thanks Bill – I like your post as it resonates with me and my loved ones.

[Jennifer Blackstone]

Bill,Thank you for your comments about PD research.So many articles look promising but are usually years away or never  pan out.

What do you think is the most promising area being tested now?  What do you think about the August 31 article about CDNF?

[Bill Church]

@Jennifer Blackstone…I think that neurotrophic factors (CDNF and GDNF) are key in managing the chemical reactions involved in neurodegeneration.

 

[Christina]

Hi Bill, Can you please elaborate on this or provide links?  frontiersin.org has an article on this but it is not in laymen terms.

[Andrew L.]

https://www.youtube.com/watch?v=izByNv8wE5g&t=237s

 

Watch from 4 minutes on, reminds me of “awakenings”

 

Doesn’t address what Bill is talking about tho….

[Andrew L.]

Exercise apparently  helps in Parkinson’s by increasing the release of neurotrophic factors as mentioned above….making exercise a key component to the puzzle.   One problem apparently is that every time the research scientists come up with an important basic science research modification, it takes years for the new information to translate clinically as new clinical trials are needed. So if you are a few years into a clinical trial and then find something better, you just can’t switch it out…. Bottom line is there can be a huge lag (as in multiple years) between the basic science research breakthroughs and the actual clinical applications.  Finally, COVID slowed everything to a near halt making 2020 essentially a lost year.  Sorry if that is too negative, I have PD but also think it is important to keep it real…

[Charles H Levin]

I was recently tested for genetic mutations to see if I carry the lrrk2 gene; I do. This now means I’m eligible to be part of a study by Denali Therapeutics that seeks to repair that genetic defect (at least that’s how I understood my doctor’s explanation).

I’m still unclear about other details as are the people at Cedars Sinai in LA who I’m working with … No one seems to know if what phase this will be and when it will start. The study coordinator at Cedars was confident that my doc’s patients who qualify will be entered into the study ….

Eligibility criteria are a PD Diagnosis, LRRK2 gene and Ashkenazi Jewish descent …

If anyone else has more details on this, I would appreciate hearing from you …

[Randy S.]

 

Awesome link summariing all active trials related to disease modifying therapies and symptomatic therapy

 

https://www.ncbi.nlm.nih.gov/core/lw/2.0/html/tileshop_pmc/tileshop_pmc_inline.html?title=Click%20on%20image%20to%20zoom&p=PMC3&id=7458531_jpd-10-jpd202128-g003.jpg

[Paulo]

<div>Portuguese company hopes to licence drug that prevents Parkinson’s progression</div><div>

A company based in Covilhã is in the process of finalising
pre-clinical tests on an enzyme responsible for producing oxidative
stress that can be shaped to levels that prevent the progression of
Parkinson’s disease.

https://www.portugalresident.com/portuguese-company-hopes-to-licence-drug-that-prevents-parkinsons-progression/

</div>

portugalresident.com

Portuguese company hopes to licence drug that prevents Parkinson's progression - Portugal Resident

A company based in Covilhã is in the process of finalising pre-clinical tests on an enzyme responsible for producing oxidative stress

[Ally]

Thanks for sharing this, Paulo!

[ajs1]

<div>https://health.ucsd.edu/news/press-releases/2020-06-24-one-time-treatment-generates-new-neurons-eliminates-parkinsons-disease-in-mice/
</div>

This is fours years old so it maybe outdated. The Doctor is no longer at San Diego.

health.ucsd.edu

One-Time Treatment Generates New Neurons, Eliminates Parkinson’s Disease in Mice

UC San Diego researchers discover that inhibiting or deleting just a single gene, the gene that encodes PTB, transforms several types of mouse cells directly into neurons.

[timbob1952]

Here’s a link to a recent article on progress in a different type of PD treatment research:

https://www.freethink.com/health/the-exciting-research-that-may-cure-parkinsons

Further down in this discussion, there’s a four year old comment from Bill Church which mentions this CDMA research.

Unfortunately, it seems these researchers like to spring these news releases very early in that they are typically years from clinical trials.

Tim

freethink.com

The exciting research that may cure Parkinson’s 

GeneCode is developing a drug it hopes won't just alleviate Parkinson's symptoms but also protect and restore patient's neural health.