Intro

[donbob]

I just wanted to convey two comments on the 23&Me test.....

Thanks very much for that information. I have expanded my search for testing companies.

[donbob]

....Gene Match, I am guessing that might be one of the 3 programs......

. Yes, I think the cheek swab I sent off this week was from this group. Thanks for your informative post.

[donbob]

I too look forward to hearing more about the studies that you've enrolled in.

The Wiki is great. I have registered on these sites: endalznow.org, AlzU.org, my.healthregistry.org, and apt webstudy. I think one of those is more of an education site.

[donbob]

Thanks for this site. Briefly, I am male, 70 and in good health in all ways... I have signed up for three online databases for Alzheimers research. Sent a cheek swab to one of them, but the results won’t be made available to me. To find my genetic makeup, I presume 23andMe is the route. I wonder should I spend $200 for a report or $100. I am interested in the Apoe results. Any advice would be greatly appreciated.

Welcome, donbob!
Thank you so much for signing up for 3 Alzheimer's research sites!! Many Alzheimer's studies have in the past not met their enrollment targets because of a lack of participants who lived close enough to a study site, had a study partner, if required, met the age and health requirements, and had the time and ability to commit to the study.

As someone in the Generations Study, which recruits in part through Gene Match, I am guessing that might be one of the 3 programs for which you have signed up. You would have been sent a cheek swab to send back to them. My understanding from my own experience and what I have been told by the study location staff, is that people who are contacted to see about participating in a study are usually--but not entirely--people with ApoE 3/4 or 4/4. The reason is that those two groups are the focus of the Generations 1 and Generation 2 trials of two anti-amyloid therapies. A few people are called in who are ApoE 3/3, because part of the process is to determine what the effects are of disclosure of genetic risk in a carefully controlled and supported setting, in which information is provided about ApoE 4 and the study staff make a judgement if the potential participant is able to understand and emotionally deal with that information. (I think the parameters for "dealing with" are pretty broad, but would exclude, for example, someone who said they would be suicidal if they found out they had an increased risk for Alzheimer's.)

If you did sign up through Gene Match more than a few months ago, and have not heard from them, I think it's safe to conclude that you are probably ApoE 3/3, otherwise they would be eager to talk to you! If you haven't signed up with them, you can do so here: Gene Match You would be under no obligation, of course, to go into a site for the results, or to participate in a study if called.

If you are ApoE 3/3, it doesn't mean you have no risk of the dementia that your mother's relatives experienced, since the "average" person with ApoE 3/3 has about a 10-15% risk of either mild cognitive impairment (MCI) or dementia of Alzheimer's or other type by the age of 85. But it does mean that with good health and no subjective memory complaints at age 70, you are probably a long time away from having to worry about that, provided you keep up what I assume are great habits and strong cognitive reserve (a history of good education and problem-solving or other occupational challenges. Alzheimer's and other dementias, don't happen overnight and in the general population, it now appears that only about 1/3 of people over age 85 have MCI or AD, not the 50% that is sometimes in news stories.

And if you do decide to go with 23&me, I would agree with Gillyp that it's easiest to pay the $200. to get the health reports. Unlike many people who are stunned by their results, it sounds like you have made a reasoned decision to try to know your own health risks. You may confirm that you are ApoE 3/3, which means you would not have passed on an ApoE 4 gene to any children you have. You might even be able to tell them, as I could tell my two sons, that I didn't pass on a gene for hereditary early baldness from my father. For my sons, that was "priceless".

NF52,
You nailed it with this post. I was evaluated by the Generations screeners. Since I am e3e4, I didn’t meet Generation 1 criteria. Perhaps in the future I may be able to contribute via Generation 2. Apoe4.info is rich with information. I have been reading as much as there has been time available. Learning a lot. Thanks to all those contributing and maintaining.

[NF52]

I was evaluated by the Generations screeners. Since I am e3e4, I didn’t meet Generation 1 criteria. Perhaps in the future I may be able to contribute via Generation 2. Apoe4.info is rich with information. I have been reading as much as there has been time available. Learning a lot. Thanks to all those contributing and maintaining.

Always glad to hear that we've been helpful! Hope we can continue to be, donbob.