Site Statistics

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mike
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Site Statistics

Post by mike »

In End of Alzheimer's, it mentions that the "ApoE4.info website now includes approximately 800 members, that "about 99 percent" are on some variation of the protocol, and that they are hearing repeated stories of improvement."

I checked, and that is now 3,333 members - congratulations!

It sounds like you guys are keeping track to some degree what members are doing, or was that when there were fewer members? Are you keeping any kind of statistics? The site is still new, but with the nature of AD, there will be many different outcomes over time. It would be nice to actually know statistically, instead of just anecdotally, how folks do on the protocol. Not sure exactly how you would do that...
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Stavia
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Re: Site Statistics

Post by Stavia »

Hi Mike, we have discussed this over the years. The thing is (a) there are many different personalised approaches but mainly (b) we are all volunteers, many with fulltime day jobs, and it would be a huge amount of ongoing work to collect and curate the data.

When we were tiny we could track our active 20 or so members, but that was years ago.

So far nobody has stepped up and volunteered to lead this body of work.

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mike
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Re: Site Statistics

Post by mike »

Stavia wrote:Hi Mike, we have discussed this over the years. The thing is (a) there are many different personalised approaches but mainly (b) we are all volunteers, many with fulltime day jobs, and it would be a huge amount of ongoing work to collect and curate the data.

When we were tiny we could track our active 20 or so members, but that was years ago.

So far nobody has stepped up and volunteered to lead this body of work.
I would be interested in hearing what happened to the original 20 members even.

Julie G also mentioned Survey Monkey on another post. I would be willing to look up how to do that. As you say, there are many different approaches, but seems like you could ask a few questions regarding how closely folks thought they were following the protocols, and maybe a checklist of the particular areas where they were or were not following. Would want to know ApoE genotype. And of course, with AD, it would be good to find a way to track those that have left the forum (did not take next survey?)... We would want to be able to follow progress or lack there of, so any kind of test scores, etc. (I'm not up on this part yet, I'm still working on getting a baseline setup for myself). If I could get help with the questions, I would be willing to give it a try.

On another topic, the wiki is great - thanks!
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Julie G
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Re: Site Statistics

Post by Julie G »

Hi Mike! Survey Monkey would be a great rough start, but what we really need is an interactive technology platform in which members could easily upload data, specific protocols, changes within the protocol, health information, health changes, biomarker and cognitive testing, etc. over a long period of time.

As a self-organized activist group, we are beautifully poised to collect this data. We've had multiple researchers reach out to us re. an establishment of such, but to date no one has followed through. (We may be close.) Something like this is surprisingly expensive. If we were to spearhead such a project, we'd have to deal with HIPPA and other liability issues. I don't mean to discourage you, but rather let you know the issues we've encountered. Shoot me an email at: Juliegee@apoe4.info if you'd like to pitch in.
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ru442
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Re: Site Statistics

Post by ru442 »

The other issue Julie is GDPR (which I am intimately familiar with due to job requirements). We are a diverse and global group and I don't think we are prepared nor have the technology or processes in place to be compliant. That would take an enormous amount of work and resources dedicated to compliance as required by law.
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Re: Site Statistics

Post by Fc1345linville »

ru442, what is GDPR?

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Re: Site Statistics

Post by ru442 »

It's the new European General Data Protection Regulation, greatly expanding European citizens right to transparency and protection of their personal information. It is geared toward companies that sell products and services, but non-profits are also in scope of this law if they are open to European participation.
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