Welcome, P45VA! I too am in the Georgetown site Generations Study, and want to welcome you warmly to the group of us who have enrolled in this study and are on this ApoE4.info site.
When you say you haven't started in the "second phase" of testing yet, do you mean you haven't met with the Georgetown team yet? I'm guessing that Gene Match notified you of a match with Georgetown and a link to the video? If so, Wesley Horton, the study coordinator at Georgetown, will probably call you soon to set up the initial meeting of what's really a pre-study phase. He and the nurses at that first meeting will be able to answer your questions at that first meeting about whether your friend could be your partner, or if it needs to be your daughter. At that point, you can decide what to do.
I do think it's important that you and your kids have accurate information about the lifetime risk if/when you talk to them. You could give them the packet you'll get at the disclosure meeting; it's basically a Powerpoint printout with easy-to-digest points. By the way, a study just came out of 17,000 people followed for decades, suggesting that the lifetime risk of AD for someone with 3/3 is about 10-15%; for 3/4s about 20-25%, and for 4/4's it's 30-55%.(
https://www.endalznow.org/press/study-e ... rs-disease). Your kids may have lots of healthy factors (diet, exercise, education) and years of future research like this study that will mitigate their risk to far less than 20-25%.
If you talk to them, please let them know not to trust Google search results saying that ApoE 4/4s have 9 to 12 times the average risk factor, which makes it look like our risk is 120%! The first Google Scholar article I read after learning my results 3 years ago was from the 1990's, and said that the "average" 4/4 person was diagnosed with Alzheimer's at age 68. Talk about a body blow! I was about to turn 62. Well, of course, that is a completely inaccurate statistic, drawn from looking only at people with Alzheimer's and 4/4 status and asking "when were they diagnosed?" It's like finding out that 90% of prison inmates have a history of childhood brain injury (reportedly true) and extrapolating to conclude that 90% of children with brain injury will end up on prison (having worked with hundreds of kids with moderate to severe brain injury, I know that 95% of them ended up back in their previous school placement with proper rehabilitation.)
It does take a while to gear up, since there's a protocol the study sites go through to make sure you're ready, willing, and able to participate in what is a 5 year study--with a "bonus" available at the end of that for up to 3 more years of monitoring! Your study partner does not have to go to every meeting. One before you start, one the day you start, and then about every six months I think.
Just out of curiosity, are you familiar with the Georgetown Hospital site? If you want to avoid driving in D.C., there's a Georgetown shuttle bus on the Massachusetts and 20th St corner a block from the Dupont Metro station. It will take you to the University, and at the shuttle drop-off there's a mini-shuttle (either a small bus or a golf cart) that comes every 10-15 minutes that take you the last 1/2 mile to the Pasquerilla building, a quick walk from the Main Hospital entrance # 2) Here's a link to helpful maps, etc.
https://www.medstargeorgetown.org/for-p ... nd-parking.
Happy April everyone!
