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10-12-2014, 06:19 PM   #1
nogutsnoglory
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23andMe IBD study - your help needed!

Hey folks,

23andMe a genetics company has partnered with Pfizer to study the saliva samples of IBD patients for genetic variations that will provide insight into new treatments and a better scientific grasp of these diseases. This study is free and easy to do! Participation is anonymous, you don't need to leave your home and takes about 15 minutes to do.

23andMe normally sells their kits to consumers who want to know more about their ancestral history and raw genetic data but those with IBD who enroll in the study are entitled to get their genetic ancestry information for free while also helping further research.

Benefits for participants:

-You will receive access to 23andMe's -Personal Genome ServiceŽ (valued at $99)

-You will learn about your genetic ancestry.

-You will have access to your uninterpreted genetic data.

"We will work together to learn how your genes and your environment could play a role in IBD drug treatment, and how they relate to IBD risk and progression."

In order to participate in the first study within the IBD community, you must meet all six criteria below:

1. You've been diagnosed with Crohn's disease or ulcerative colitis by a qualified physician.
2. You're willing to submit a saliva sample for DNA testing and complete online surveys related to your condition.
3. You have access to the internet.
4. You are at least 6 years old (minors under 18 require parental consent to enroll).
5. You are not a 23andMe customer.
6. You reside in the United States.


It's extremely easy and totally free! All you do is apply and spit in a tube you send back and fill an online survey about your IBD history ie: medications, severity, procedures etc.

I have spoken with our admin about posting this and as a moderator here I want to make clear that I have no affiliation or interest in this beyond that of a patient desperate for new research and ultimately a cure.

I hope you can join me in participating in this simple but important study. I'd be happy to try and answer any questions.

For more info and/or to apply please visit http://www.23andme.com/ibd
10-12-2014, 11:07 PM   #2
Jennifer
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I entered.
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Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
10-13-2014, 05:24 AM   #3
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Sounds amazing, it's a bummer that I don't live in the US.
Am really curious for the results, do you have them back jet?
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10-13-2014, 08:11 AM   #4
nogutsnoglory
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Maudddy, sorry the study is only US. they may sell the kits internationally though if the genetic data is of interest to you. Not sure!

I believe it said I should get an email with results in 4 weeks. I am excited lol!
10-13-2014, 08:23 AM   #5
nogutsnoglory
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Note to anyone entering, you can't select crohns and UC as your diagnosis even if at one time you were misdiagnosed with one or the other. Just go with the latest diagnosis. 'Crohn's colitis' falls under crohns. Choosing both options renders you ineligible.
10-13-2014, 11:46 AM   #6
my little penguin
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Since it's not a research study per say
Do you know how they protect the information /store since the same research laws don't apply to independant commercial companies ?

Only I ask since my kiddo is 10
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10-13-2014, 11:57 AM   #7
nogutsnoglory
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"You own your genetic data. You will be participating in this research at your own discretion, answering surveys as you wish. You can also withdraw at any time. However, your saliva sample, once submitted to and analyzed by 23andMe, is processed in an irreversible manner and cannot be returned to you.
To increase the chance that meaningful scientific discoveries about your condition are made, 23andMe may share your de-identified, individual-level data with qualified research partners, such as Pfizer. This means, you are anonymous to Pfizer and anyone else we partner with in the future (global researchers, global scientists, etc).

The shared data will be stripped of all identifying components (name, email, address, user ID and password). If 23andMe shares your genetic or self-reported data with a qualified research partner, this action cannot be undone and your data will not be returned to 23andMe."
10-13-2014, 02:20 PM   #8
Nancye50
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Done, thanks for sharing!
10-13-2014, 05:33 PM   #9
poopaholic
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Signed up and already received email stating that my kit is on its way.
10-14-2014, 08:39 AM   #10
nogutsnoglory
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They are super fast. I think I got my kit 3 days after I signed up. Now just waiting for results and of course will watch their updates with interest to see if they make any breakthroughs.
10-15-2014, 12:49 PM   #11
poopaholic
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Received my kit in the mail today. That was quick.
10-15-2014, 04:29 PM   #12
nikimazur
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Done weeks ago, and have my results back! Love it!
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Original Dx: April 2011


Crohn's, Traumatic Brain Injury, Autoimmune Hepatitis (May 2014)


Current meds:Bactrim DS, Azathioprine, Entyvio, levbid
Past meds: Pentasa, Lialda, Prednisone, Entocort, Asacol HD, Prilosec, Lomotil, Lotronex, Nexium, Myfortic, Humira




http://lifeinthetimeofuncertainty.blogspot.com
10-15-2014, 05:12 PM   #13
Beach bum
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So disappointed this is not for the UK too, but really hope it helps them with new research.
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Crohn's Diagnosed : 12/07/12
Been on : Budesonide (some relief but not enough).
Switching to : Azathioprine and started Infliximab 14/08/12
Juicing every morning.
Taking vitamin D spray
Multi vits & iron
And Probio 7 probiotic.
.

Being given a "drugs rest" from Aza - 17/9/14
10-15-2014, 05:14 PM   #14
nogutsnoglory
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Nikimazur so glad you got your results. Anything interesting? Did you use Genetic Genie to decipher? Sorry beach bum wish it was intl
10-15-2014, 05:21 PM   #15
nikimazur
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Yes, used Genetic Genie to decipher results. One thing that stuck out to me, was being heterozygous for the MTHFR gene. I know there were previous posts about this mutation regarding IBD. I would like to spend more time going over it, but have been quite busy. I had no real surprises when it came to heritage, as my family has been quite informed. I'm 99.99 percent European.
10-15-2014, 06:22 PM   #16
nogutsnoglory
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I'm really curious about the MTHFR genetic mutation as well. I'm going to start Deplin and hope that really helps me if indeed I have the folic acid absorption issue due to IBD and that. I think they said 4-6 weeks till I get my results.
10-15-2014, 07:04 PM   #17
Sef0912
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Sounds interesting. Might teach me a thing or two about myself.
10-15-2014, 09:25 PM   #18
syzygy
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Thanks for posting this. I was planning on doing one of these kind of kits just for genealogy work at some point. Sweet!
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10-15-2014, 10:01 PM   #19
DougUte
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I've signed up.
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Crohns Medicines:
Started Humira June 22nd, 2011
Increased to weekly injections on November 1st, 2016
Due to the insurance company, Humira ended on January 31, 2017.
Started Entyvio February 9th, 2017
Loperamide 3 capsules twice a day
Vitamin B6, B12, Folic Acid
Vitamin D3 10000 I.U.
Nature Made Multivitamin
10-16-2014, 08:43 AM   #20
Emily
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ˇ Stoma
I'm doing it! thanks for sharing!!
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Age 24
  • Diagnosed with Crohn's at age 7
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  • Total colectomy with ileostomy at age 23
infliximab & azathioprine
10-16-2014, 03:44 PM   #21
sir.clausin
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Signed up!
10-16-2014, 04:01 PM   #22
syzygy
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One thing concerned me in their terms of service. There's a bit in there about how insurance companies and the like sometimes ask whether you have any genetic information and how it could be considered fraud if you did not disclose having the info from their service. I'll probably still go ahead and do it, but might make another push on life insurance first.
10-16-2014, 04:50 PM   #23
nogutsnoglory
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I don't see why insurance companies would care about it but I also don't see any reason why I'd hide that I'm part of a genetic database for IBD from them. Insurance knows I have IBD anyway considering all the expenses and coding for treatment.
10-16-2014, 08:43 PM   #24
syzygy
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It's more about life insurance, because there are protective laws in place about health insurers. Also, it's not as much the diagnosis of Crohn's as the access to the wide variety of genetic markers that we'd receive info on. What they seem to give is a large amount if raw genetic data, some if which will contain info on markers known to correlate with various diseases and mortality (or which in the future may be found to correlate.)

I'm not specifically trying to talk anyone out of it, but it was a point that gave me pause.
10-16-2014, 09:09 PM   #25
nogutsnoglory
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Those genetic markers would be given to us and de-coded and anonymous for research purposes. It's my understanding that not even pharma and researchers will know whose DNA they are dealing with.
10-16-2014, 10:03 PM   #26
my little penguin
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But you will have a copy of the raw genetic data contain info on lots of different potential diseases which just like anything else must be disclosed to the life insurance company .
Granted not sure how much an issue this would be .
Also it's the raw data since the company was banned from giving out reports on the possible what ifs to the public by the FDA
10-17-2014, 07:28 AM   #27
nogutsnoglory
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They wouldn't obtain the report though, it's only shared with us. I wouldnt worry about it to be honest because over 500,000 Americans have signed up with 23andme and just because one has a genetic risk doesn't mean anything will happen. Everyone has genetic risks.
10-17-2014, 09:42 AM   #28
nogutsnoglory
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Also, just to put any fears to rest that even if you disclose to a life insurance company that you had a genetic test done, you can know you join hundreds of thousands of healthy Americans who paid 23&me for health info and ancestral data. Just participating with 23&me doesn't mean one is ill. Plus with the Obamacare act, insurance could not discriminate based on pre-existing health issues. I'm not a lawyer but think it's all ok.
10-19-2014, 12:27 AM   #29
DougUte
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Got the Kit today. All ready to go.
10-19-2014, 09:04 PM   #30
nogutsnoglory
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Great to hear so many of you are participating! I can't wait till we get our results and can also try to put pieces together ourselves.

My only thought about this study is couldnt anyone claim they have crohns to get a free kit? I'm not worried about it here or probably anywhere for that matter but all I did was check a box and didn't have to prove by doctors note that I have ibd. Does my spit show im legit lol?
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