Hello and my research :)

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
Carlene39
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Hello and my research :)

Postby Carlene39 » Tue Jan 07, 2020 6:27 pm

Hi all, thanks for allowing me to join this site.

I am a metabolic biochemist with a passion for bringing together Western and Eastern medicine to prevent and treat disease. While my ApoE status is unknown, a current research project is to correlate genetic SNP data (as well as other markers, if possible), with profiles from ancestral medicine, such as Ayurveda and Traditional Chinese Medicine, as well as other measures of body composition/phenotype, sleep chronotype and so on.

Ultimately, the goal of this research is to provide a more holistic, systems-level approach to preventing and treating disease, particularly in the case where a disease-associated SNP has been discovered, allowing an individual to determine the best course of action for their specific body type and genetic profile, in a holistic manner.

What I am looking for, to enable this research, is people who are willing to share their genetic information (confidentially) and fill out a number of questionnaires for me. This would remain confidential and no individual data would be reported, merely correlations for the purpose of research.

It was suggested that I join up and post on this forum, in the hope that many of you might be willing to help me out. I would of course share all my results openly, in the case that they may be able to help in some way.

Thanks again,

Carlene

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Re: Hello and my research :)

Postby Tincup » Tue Jan 07, 2020 7:55 pm

Carlene,

Welcome!

How do you suggest we connect with you, if interested?
Tincup
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HopefulCaroline
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Re: Hello and my research :)

Postby HopefulCaroline » Tue Jan 07, 2020 8:14 pm

Carlene39 wrote:Hi all, thanks for allowing me to join this site.

I am a metabolic biochemist with a passion for bringing together Western and Eastern medicine to prevent and treat disease. While my ApoE status is unknown, a current research project is to correlate genetic SNP data (as well as other markers, if possible), with profiles from ancestral medicine, such as Ayurveda and Traditional Chinese Medicine, as well as other measures of body composition/phenotype, sleep chronotype and so on.



Carlene39,

Welcome to the forum! We appreciate your introduction and are grateful you are here.

I hope you are able to find valuable information throughout the site as well as willing participants for your research. Although based on your background I am sure you are quite well informed, if you haven't already had a chance, the Primer is an introduction to APOE4, biochemistry and possible current prevention strategies written by Dr. Stavia a member.

The Wiki is another great resource for additional information including a "how to" get the most out of the site.

Many of our members are currently involved in research studies and are keen to keep up with the latest research and findings so I would venture that you will have some interested participants. Please let us know how to get in touch with you if people are interested in learning more.

Once again, welcome to the forum and best of luck with your research! We look forward to hearing the results.

Sincerely,
Caroline
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floramaria
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Re: Hello and my research :)

Postby floramaria » Tue Jan 07, 2020 11:44 pm

Carlene39 wrote:What I am looking for, to enable this research, is people who are willing to share their genetic information (confidentially) and fill out a number of questionnaires for me. This would remain confidential and no individual data would be reported, merely correlations for the purpose of research.
Carlene

Sounds interesting. I’d like to participate.
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Re: Hello and my research :)

Postby NF52 » Wed Jan 08, 2020 8:43 am

Carlene39 wrote:...I am a metabolic biochemist with a passion for bringing together Western and Eastern medicine to prevent and treat disease. While my ApoE status is unknown, a current research project is to correlate genetic SNP data (as well as other markers, if possible), with profiles from ancestral medicine, such as Ayurveda and Traditional Chinese Medicine, as well as other measures of body composition/phenotype, sleep chronotype and so on....
What I am looking for, to enable this research, is people who are willing to share their genetic information (confidentially) and fill out a number of questionnaires for me. This would remain confidential and no individual data would be reported, merely correlations for the purpose of research....
Hi Carlene,
Thanks for reaching out to the ApoE4.info community. Many researchers grapple with the dilemma of how to reach and recruit participants for clinical trials, especially if the inclusion criteria is fairly narrow (ex. ApoE 4 positive). I have participated in a large clinical trial with multiple informed consents approved by an IRB to sign, and have also been a consumer reviewer of research applications related to Alzheimer's and TBI, so definitely support research which is innovative and impactful!

I'm hoping you can tell us some more about your specific situation. Is your research part of an academic project for a doctorate or post-doc fellowship? Are you working with a corporate sponsor? (I approve of corporations looking for solutions beyond western medicine.) Do you have a hypothesis that you are testing, or a research strategy based on earlier work by others that you could cite? Most importantly, I suspect, for members of this community, would be how individuals' genetic profiles would be anonymized and kept confidential, since it appears that hacking of such data has happened in health insurance and other settings at times.

Thanks for your interest in expanding knowledge!
4/4 and still an optimist!

Carlene39
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Re: Hello and my research :)

Postby Carlene39 » Wed Jan 08, 2020 3:45 pm

NF52 wrote:
Hi Carlene,
Thanks for reaching out to the ApoE4.info community. Many researchers grapple with the dilemma of how to reach and recruit participants for clinical trials, especially if the inclusion criteria is fairly narrow (ex. ApoE 4 positive). I have participated in a large clinical trial with multiple informed consents approved by an IRB to sign, and have also been a consumer reviewer of research applications related to Alzheimer's and TBI, so definitely support research which is innovative and impactful!

I'm hoping you can tell us some more about your specific situation. Is your research part of an academic project for a doctorate or post-doc fellowship? Are you working with a corporate sponsor? (I approve of corporations looking for solutions beyond western medicine.) Do you have a hypothesis that you are testing, or a research strategy based on earlier work by others that you could cite? Most importantly, I suspect, for members of this community, would be how individuals' genetic profiles would be anonymized and kept confidential, since it appears that hacking of such data has happened in health insurance and other settings at times.

Thanks for your interest in expanding knowledge!


Thanks NF52.

I come from a rich history in academia; I completed my PhD in 2010, and went on to post-docs in Canada and NZ after that. However, I recently left academia to start an independent business in Functional Nutrition Research & Consulting, and thus, the research is my own, funded and carried out specifically by myself.

The primary hypothesis of the current research is that genetic markers will correlate with, and show grouping within, the doshas proposed by Ayurvedic Medicine in the first instance, as well as specific personality types and sleep chronotypes.

Ayurvedic Medicine understood that disease could stem from a multitude of different factors, depending on a person's unique constitution (body and mind), lifestyle and diet, and the interaction of these things. Now, with genetic data, we are uncovering similar results. For example, there is recent data suggesting that certain polymorphisms appear to correlate with distinct personality types and neurological profiles. It makes sense then, that some Ayurvedic constitutions may be predisposed to carrying certain SNPs. Some groups have started to look into this in terms of genes and genetic markers, but have primarily used genome-wide analysis, which is much less focused and therefore harder to determine specific patterns from.

We must also look at the big picture and how different SNPs group together within an individual to determine the best course of treatment. Ancestral medicine, although based upon observation rather than experimental data, holds an abundance of this type of information, specifically with respect to balancing biochemistry, and therefore has the potential to add significantly to the way we approach carrying certain SNPs.

My hope is to substantiate the link between ancestral and Western medicine, and thus mind and body, and in doing this, contribute importantly to our current understanding and practice of disease prevention and treatment.

In terms of anonymity, I will be the only one handling the data. I will send a questionnaire (including a genetic data report sheet) to interested individuals, who will then fill out the sent questionnaire and return to me unnamed. I will create a shared drive in Google, and each participant can simply upload their unnamed report/datasheet. Alternatively, sheets can be couriered to me. This means I will have no idea who each data set belongs to.
I will also note that I will be seeking information from as many different groups and people as I can, in order to create a large and comprehensive dataset.

Re dissemination, I will be writing this as a scientific paper, but mostly, this work will form the basis of a book :).

I hope this all helps!

Carlene

Carlene39
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Re: Hello and my research :)

Postby Carlene39 » Wed Jan 08, 2020 3:46 pm

floramaria wrote:Sounds interesting. I’d like to participate.


Fantastic, thank you.

Anyone who would like to participate can either contact me through a private message on here, or via my email address:
drcarlenestarck@gmail.com

Thanks again!

Fiver
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Re: Hello and my research :)

Postby Fiver » Thu Jan 09, 2020 11:24 am

Hi and welcome. Thanks for your interest in the research. Can I ask some similar questions, which seem important?

Like NF52, I'm interested to know more about the study you propose. As you know, institutions and grant-funding agencies require studies to go through many rounds of review, work with institutional review boards, and have legal protections for participants. Do you have anything like this in place? It's great that you're allowing participants to submit data anonymously, but it's usually quite easy to identify someone from surveys when there is a lot of information and not many participants, not to mention return addresses on packages. Anonymous surveys also make it impossible to follow up with people over time - which limits the data you can collect.

I don't mean to sound skeptical. But the standard processes for studies like this are important to protect subjects. And, as far as I am aware, reputable journals wont publish articles without them.

Could you provide some more information about the study and about yourself?

Again, I don't mean to be negative. I just want the community members here to be protected.

Thanks.
Last edited by Fiver on Thu Jan 09, 2020 11:39 am, edited 1 time in total.
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