group study

[sophiazz]

I have thought for a long time Julie a group like this with so many members e3 and e4 that an informal study using data from the members may be beneficial for the records.....A simple set questions diet supplements etc and a basic review every year to note changes may be invaluable even though not scientific.......it will show results in time, it could also be used statistically but anonymously to show percentages of people on certain diets or supplements etc................. ie I could as a newbie look up and see percentage members are following a certain protocol.(ie xx% on curcumin for example) After all we could still be no further forward in ten years and still debating, diets etc but if Juliegee says well 60% of our low fat members have developed mcd , or no member on curcumin has shown any cognition problems bingo, .................

[TheresaB]

Welcome to our community sophiazz.

There is a spreadsheet that can be accessed from the Wiki. Go to Biomarkers https://wiki.apoe4.info/wiki/Biomarkers, scroll down to ApoE4-Community Test Results and there's a link to a google sheet called "The Community Test Results" that anyone can edit and that some folks have populated.

Also if you go to our annual reports, https://www.apoe4.info/wp/annual-reports/, specifically last year's, 2019, it talks about some behind the scenes work to create a longitudinal open-access dataset to share anthropometrics, multiple biomarkers, and metabolomics. I'm not sure how this is progressing. I believe it is in the hands of our Scientific Advisory Council, and I'm not a member of that.

[RAJ64]

I have thought for a long time Julie a group like this with so many members e3 and e4 that an informal study using data from the members may be beneficial for the records.....A simple set questions diet supplements etc and a basic review every year to note changes may be invaluable even though not scientific.......it will show results in time, it could also be used statistically but anonymously to show percentages of people on certain diets or supplements etc................. ie I could as a newbie look up and see percentage members are following a certain protocol.(ie xx% on curcumin for example) After all we could still be no further forward in ten years and still debating, diets etc but if Juliegee says well 60% of our low fat members have developed mcd , or no member on curcumin has shown any cognition problems bingo, .................

Welcome, sophiazz! My name is Rachel and I am a support team intern here on the ApoE4.info site. Your idea is such a good one!. Crowdsourcing for medical issues is a great way to discover new information about certain conditions. TheresaB has replied with a few links to datasets on the site. Maybe some of those will be enlightening to you as well.

If you would like to introduce yourself to the group, Our Stories is a great place to do that. We would love to hear your story and connection with ApoE4, whether personal or in the interest of others.

I am not sure how long you may have been reading information here on the site before joining and posting today, so I would like to make you aware of a few tips and links that you may find helpful. If you are already aware of these things, please disregard. Or if you need more assistance, please don't hesitate to ask!

ApoE4.info contains a wealth of knowledge organized into Forums like this one and a Wiki section. Here is a link to Help You Get the Most out of the ApoE4 website.

I would like to share a few links from this part of the Wiki which I hope are helpful in some way:

How to Quote Someone. Quoting someone acts like a "tag" and will generate an email directly to the person you are quoting so they don't miss out on the conversation.

Searching the Site will help you find conversations on topics of interest and Wiki information to read more about a topic. You can do a quick search by using the magnifying glass in the upper right corner of your browser window.

To read attachments and to be able to view documents that have been shared by members you will need to be logged in so if something appears not to be available, double check to see if you are logged in. That usually solves the problem of restricted access.

Please don't hesitate to share more great ideas like crowdsourcing. In fact, please feel free to share whenever you have a question or would like to contribute in any way! You will find a supportive and knowledgeable community here. We are so pleased you have joined us today!

Warmly,
Rachel

[Julie G]

I have thought for a long time Julie a group like this with so many members e3 and e4 that an informal study using data from the members may be beneficial for the records.....A simple set questions diet supplements etc and a basic review every year to note changes may be invaluable even though not scientific.......it will show results in time, it could also be used statistically but anonymously to show percentages of people on certain diets or supplements etc................. ie I could as a newbie look up and see percentage members are following a certain protocol.(ie xx% on curcumin for example) After all we could still be no further forward in ten years and still debating, diets etc but if Juliegee says well 60% of our low fat members have developed mcd , or no member on curcumin has shown any cognition problems bingo, .................

Great idea, sophiazz! This is something our BOD has been wrestling with for a while. As Theresa points out, we have our biomarker spreadsheet, but it's not as user-friendly and accessible as we wish it were. We recognize that we're sitting on a treasure trove of data and we certainly need a better way of cataloging things. Most of our leadership either work full-time or otherwise have our time spoken for, but we warmly welcome new volunteers who are willing to spearhead an effort such as this. My dream is to have a super easy way for members to anonymously enter their anthropometrics, genetics, diet & lifestyle strategies, with results from biomarker, cognitive, mood and mobility testing to use to draw correlations- as you beautifully describe. Any enterprising software engineers want to volunteer? Please reach out to me at juliegee@apoe4.info.