Soft Launch of Our Metabolomic Project

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Julie G
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Soft Launch of Our Metabolomic Project

Post by Julie G »

Friends, a number of you have been following Dayan Goodenowe's research into the role of plasmalogens in neurological health and have expressed interest in his company's metabolomics testing and plasmalogen precursor supplements. You may also be aware that some of our community leaders have been collaborating with Dr. Goodenowe. From our 2020 Annual Report:
Huge thanks to MarcR and efcole (Emily Cole, PhD, academic researcher) for continuing to work behind the scenes with Prodrome Sciences to create our longitudinal open-access dataset in which we plan to share our anthropometrics, multiple biomarkers including metabolomics, with periodic cognitive testing along with a description of our diets and lifestyle strategies. This framework will provide an opportunity for participants to conduct self-directed or “action” research (where patients and researchers authentically work together) that will not only inform themselves about how specific strategies affect their health and cognition, but also our community, and the broader scientific community. The metabolomic portion will provide an opportunity for us all to see how specific strategies are affecting us at a cellular level.
A number of us have had our first metabolomics tests and have incorporated the supplements into our diets. Currently we are building a portal to gather additional biometric information and share our anonymized results publicly. We have named the project:

Metabolomics
Open-Access
Dataset for the
ApoE4.Info

That's MOD4 for short. Despite the 4, anyone is welcome to share results. The tests are not ApoE4-specific.

Our collaboration with Prodrome has several important features that support the project:

1. MOD4 participants receive test results directly via email in two formats. The first is the standard color-coded PDF result document that Prodrome delivers to all customers and that puts the numeric results in context. Is a given result optimal, sub-optimal, cautionary, or poor? If not optimal, is it high or low?

The second is a CSV file that is suitable for direct database import. Crucially, this means that you can forward the CSV file to mod4@apoe4.info, and we can anonymize and import it automatically. There's no need for anyone to retype the results.

If you've previously had a ProdromeScan and would like to include that in the MOD4 project, simply write “For APOE 4 Research Project" on the top of the Test Requisition Form (1 page of the paperwork in the kit) at the time of your next blood test kit submittal to Prodrome. They will send your current and past results to you in a CSV file that you can pass along to us at mod4@apoe4.info

2. Normally the ProdromeScan test is only offered through healthcare professionals. Prodrome has waived this requirement for our community.

3. Prodrome is offering discounts on tests and supplements for MOD4 participants. You can begin participating in the project by ordering blood tests here and blood test/supplement bundles here. There is no formal sign-up for members wishing to participate in MOD4. Please forward the CSV file(s) of your blood test(s) that you receive from Prodrome to the MOD4 project email, mod4@apoe4.info. (The CSV file is best suited for direct database import.)

4. Anyone in our community is welcome to purchase blood tests and supplements from the Prodrome Store for a 25% discount with code APOE4GROUP25 at checkout.

To summarize, we have a bit of data, and we are working to incorporate it into a portal so we all can view the anonymized results. We would love to have more data, and we know that some of you have been eager to begin, hence our sharing this opportunity. For those who want to learn more about Dr. Goodenowe's work, we recommend the two podcasts here and the links under the Resources headings of the individual podcast pages.
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Re: Soft Launch of Our Metabolomic Project

Post by johnseed »

Hi Julie, that's exciting, thanks!

Is there (or will there be) a forum where MOD4 participants can discuss their self-directed research programs? In particular, given that my main issue is memory and a hippocampus that is small compared to the rest of my brain, I'd like to carefully design memory tests that I can administer for baseline so that I can gauge the impacts as thoroughly as possible. I'm hoping that a conversation with others engaged in MOD4 would be helpful.

How many of you from the APOe4 community have already had your first metabolomics tests and have incorporated the supplements into your diets? Did you work together designing before-and-after testing protocols? What were your findings? Did the supplements significantly impact cognition? Did biomarkers significantly improve? I guess if you're organising MOD4 you must have been impressed, would you (all) be willing to share your results or at least your impressions? Did all of you who did these earlier trials of Prodrome supplements continue to incorporate them into your protocols?

Thanks for your work, I'm so excited to be part of this and I think that that intellectual excitement is playing a big role in my cognitive recovery.

John
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floramaria
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Re: Soft Launch of Our Metabolomic Project

Post by floramaria »

Julie G wrote:To summarize, we have a bit of data, and we are working to incorporate it into a portal so we all can view the anonymized results. We would love to have more data, and we know that some of you have been eager to begin.
Hi Julie G, I did the ProdromeScan several months ago and have been taking ProdromeNeuro and ProdromeGlia since then. I already have a ProdromeScan test kit to do a repeat test. Is there any way that the information I already have and the info from the next test can be incorporated?
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Julie G
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Re: Soft Launch of Our Metabolomic Project

Post by Julie G »

Is there (or will there be) a forum where MOD4 participants can discuss their self-directed research programs?
Absolutely! As we further develop the program we will have a forum category specifically directed to this project. In the meantime, we can discuss it right here.
How many of you from the APOe4 community have already had your first metabolomics tests and have incorporated the supplements into your diets?
So far, our BOD has participated in the first round of testing. We wanted to walk through the process, work out any kinks, before announcing the opportunity to our membership. I'm sure each of us will be discussing our results and ongoing experimentation moving forward. For now, we just have baseline results. Most us us (with one exception) were already taking the plasmalogen precursor prior to that first round of testing.
Hi Julie G, I did the ProdromeScan several months ago and have been taking ProdromeNeuro and ProdromeGlia since then. I already have a ProdromeScan test kit to do a repeat test. Is there any way that the information I already have and the info from the next test can be incorporated?
My guess is yes — absolutely. Emily Cole, PhD, our project manager (efcole on the site) will assist you with this. Stand by for her response. So happy you can participate. I suspect that we will uncover some novel correlations that may be helpful to present and future E4 carriers.
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Re: Soft Launch of Our Metabolomic Project

Post by Emily C »

floramaria wrote:
Julie G wrote:To summarize, we have a bit of data, and we are working to incorporate it into a portal so we all can view the anonymized results. We would love to have more data, and we know that some of you have been eager to begin.
Hi Julie G, I did the ProdromeScan several months ago and have been taking ProdromeNeuro and ProdromeGlia since then. I already have a ProdromeScan test kit to do a repeat test. Is there any way that the information I already have and the info from the next test can be incorporated?
Hi Floramaria,

Thanks for your question - I have reached out to Prodrome to ask if your results can be sent in CSV form in addition to their standard results report, so that we can easily include your results to our data set. I asked if Prodrome can send your original results in CSV form as well, fingers crossed.

I will let you know as soon as I hear back from Prodrome. Please let me know if I have misunderstood your question!

Emily
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floramaria
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Re: Soft Launch of Our Metabolomic Project

Post by floramaria »

Emily C wrote: Hi Floramaria,
Thanks for your question - I have reached out to Prodrome to ask if your results can be sent in CSV form in addition to their standard results report, so that we can easily include your results to our data set. I asked if Prodrome can send your original results in CSV form as well, fingers crossed.
I will let you know as soon as I hear back from Prodrome. Please let me know if I have misunderstood your question!

Emily
You understood perfectly. Thanks.
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Re: Soft Launch of Our Metabolomic Project

Post by circular »

Thank you to all the trailblazers who can both afford to do this and also choose to. Hopefully in time the results will bolster the efficacy and safety of using the Prodrome supplements, thereby drawing in more customers and eventually making an even lower price feasible than the current discount offered through this program. Go team!
ApoE 3/4 > Thanks in advance for any responses made to my posts.
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Brian4
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Re: Soft Launch of Our Metabolomic Project

Post by Brian4 »

Julie,

This is amazing! Huge thanks to you, Marc, Dr. Cole, Dr. Goodenowe and the people at Prodrome, and everyone else who worked on this. Not only will this help advance some really important science, it will inspire other patient-researcher collaborations.

Brian
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Re: Soft Launch of Our Metabolomic Project

Post by Emily C »

floramaria wrote:
Emily C wrote: Hi Floramaria,
Thanks for your question - I have reached out to Prodrome to ask if your results can be sent in CSV form in addition to their standard results report, so that we can easily include your results to our data set. I asked if Prodrome can send your original results in CSV form as well, fingers crossed.
I will let you know as soon as I hear back from Prodrome. Please let me know if I have misunderstood your question!

Emily
You understood perfectly. Thanks.
Floramaria,

I heard from Prodrome - when you receive your next set of results from Prodrome, they will send the CSV files for both blood draw kits you submitted - the original and this 2nd kit. (You should receive 3 attachments from Prodrome at that time - Prodrome's detailed results for your 2nd kit, and the 2 CSV files.)
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Re: Soft Launch of Our Metabolomic Project

Post by alznomore »

I have also had my first Prodrome Scan and would like to participate in MOD4. Is there a sign up process or do I just send my CVS file to the MOD4 email when I am next tested. Also, do I have to be taking ALL of Dr. Goodenowe's recommended supplements or is okay to just be on Prodrome Neuro and supplements recommended by my practitioner?
Thanks,
Laureen
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