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23andme IBD Research Study - Yearly Health Survey

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Posted 4/1/2018 3:49 PM (GMT 0)
I am part of the IBD study group and I feel like my survey responses are no longer relevant. Since surgery I don't take any drugs, but 'surgery' is never an option on the survey... I have to select "I don't take medication for my UC". Then it asks how many days over the past month (or weeks) UC has impacted my life, and for me, it is always 0. I know if I hadn't had surgery, my answers would be different and probably more inline with what they are looking for. From my responses, it sounds like I haven't treated my UC in years and I have no symptoms.
Posted 4/1/2018 4:07 PM (GMT 0)
How is this related to 23andme?

I can see your point regarding the study....makes sense.

q
Posted 4/1/2018 4:20 PM (GMT 0)
A bunch of us did the free IBD study through 23andme and the surveys were part of the study. We received the full genetic results in addition to our ancestry, a $200 value, for free! Every year they send an email about updating my health information. I received the email the other day and I was taking the quiz this AM and thinking that my results aren't really doing anything positive for the research.
Posted 4/2/2018 12:12 AM (GMT 0)
Sometimes they give you a text box where you can write your own stuff. One time I mentioned there that I had Trichotillomania and a little later one of the survey questions asked me about it. Next time you have a text box mention your surgery.
Posted 4/2/2018 3:13 AM (GMT 0)
If you want to participate in this type of research, I would suggest the IBD partners surveys, through CCFA. They ask about surgeries and tailor questions based on your answers. Not sure how they handle those with j-pouch, honestly.

I don't think you should participate in the 23 and me study if you don't have UC anymore.
Posted 4/2/2018 3:21 AM (GMT 0)
I think they should make a question, or group of questions, geared toward people who have had surgery. Perhaps they can collect data on that group too... or at least say "thanks for participating, your response is no longer needed". The current state of things, you just don't know what to click and it's confusing.

Andrina, they do ask questions about my depression and migraines. That's partly why I continue to answer. It's once a year, so this is my 2nd year with basically no useful data. I didn't have a single fill in box this time around. sad Maybe they won't ask me anymore...
Posted 4/2/2018 4:18 AM (GMT 0)
Sorta off topic...

Did you gain any useful information from the 23 and me testing?

I have been considering having it done.
Posted 4/2/2018 2:37 PM (GMT 0)
It mostly depends what you're looking for out of 23andme. It's interesting stuff to know, about your ancestry (percentage English, German, from Nordic countries etc), and it can tell you if you have any genetic cousins or others with a shared amount of dna. Other random tidbits are shown as well, like I am in the 96th percentile on neanderthal dna (something my dear wife can attest to lol).

The health stuff isn't all that useful, in my opinion as it is just checks for rare genetic conditions/diseases for the most part, and whether you are a carrier. 23andme doesn't' know much about UC or the underlying genetics of it, so it's not going to tell you anything interesting about UC or how to treat UC.

You can download your genetic data and upload it to other sites that have more health information, I uploaded mine to Promethease (which brings up scientific articles based on specific genetic snips you have). You might have increased risk of certain health conditions based on certain snips, decreased on others, common snips and rare snips. Lots of information to sort through.

There's no real genetic counseling, or support information about your DNA from 23andme. You make of it, what you make of it. It'll create as many questions as answers.
Posted 4/2/2018 2:38 PM (GMT 0)
clo, I didn't really gain anything too useful, but the ancestry information was fun. The genetic tests are kind of scary. Some of the results tell you if you're at increased risk for very serious conditions. It does say being at risk doesn't mean you will develop the condition, but it definitely makes you think... They are going to be adding breast cancer soon, which is good to know, but scary. I guess it's all good to know. The ancestry is fun, but mine wasn't anything out of the normal. It was actually exactly what I expected.
Posted 4/2/2018 4:24 PM (GMT 0)
I was thinking of it as well.....how long did it take to get results?

q
Posted 4/2/2018 4:34 PM (GMT 0)
I did it years ago. I think it took a couple weeks. Your kit has a number and you register it, and they keep you up to date with updates & information. Since I am in that study, I get info about IBD, and also about these surveys. I heard they are adding a lot of new ancestry data in the next couple months. I wonder if mine will change at all, but I doubt it since it's european and that's probably the most reported group. They have a few sales each year. I think black friday they did almost half off. If you join their mailing list you will get the promos. It's kind of a cool gift too. I really want to get it for some of my family members who are interested in ancestry.
Posted 4/2/2018 4:36 PM (GMT 0)
Thanks nnsg! I'll check out if there's a canadian link.

q
Posted 4/3/2018 3:22 AM (GMT 0)
Look for contact information on the 23andme website. If you send an email they will answer your question. They are fairly responsive.
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