1. < Just Want to Talk

Anyone participating in the Tapestry DNA Sequencing Research?

Posted by dazlin @dazlin, Oct 19, 2020

if you have volunteered or declined to participate, I'd like to here your thoughts. I was on the fence, very undecided, yet I decided to go ahead to do it. I have a few low grade health problems im dealing with , and really dont want to hear anymore. That said, I realize this testing may be of great value at some point. Also its strictly voluntary and can be declined at anytime. I sent mine in today.
Whats your thoughts??

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MGMolly | @Erinmfs | Mar 12, 2021
In reply to @paula3166 "I will ask you the same question I asked another response. How long between the traits..." + (show)
@paula3166

I will ask you the same question I asked another response. How long between the traits and ancestry did you get medical? I got traits and ancestry about two months ago but no medical. Were you positive on any of the genes they tested? I am trying to understand what is the reason for such a long wait. I sent sample last October. Helix delivered them to Mayo at end of January.

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I asked the Mayo Tapestry team about the delay, they said that there are delays due to testing supplies shortages - due to the covid pandemic.

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Erin | @erober80 | Mar 13, 2021
In reply to @paula3166 "When do you get the medical? I got traits and ancestry two months ago but not..." + (show)
@paula3166

When do you get the medical? I got traits and ancestry two months ago but not the medical. Were you positive for any of them? I am trying to understand why I haven’t received my medical ones yet seems like a really long time for mine.

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I received my Traits and Ancestry results a few weeks ago and in my email there was a disclaimer that said to be aware that Helix is using their lab to support the nation with much needed COVID-19 testing and it may be a couple months before I receive my Health Results. Hope that helps!

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rashida | @rashida | Mar 13, 2021

@erober80 is this test like the 23 and Me or Ancestry.com? Is there a cost to it, and is it available in Canada? I’ve always been curious about getting one.

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2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Mar 13, 2021
In reply to @rashida "@erober80 is this test like the 23 and Me or Ancestry.com? Is there a cost to..." + (show)
@rashida

@erober80 is this test like the 23 and Me or Ancestry.com? Is there a cost to it, and is it available in Canada? I’ve always been curious about getting one.

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@erober80 I think the testing is different for pharmacogenetic tests. Here's some information from Mayo Clinic's Center for Individualized Medicine on Drug Gene Testing - https://www.mayo.edu/research/centers-programs/center-individualized-medicine/patient-care/pharmacogenomics/drug-gene-testing
.

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1 reply
Erin | @erober80 | Mar 13, 2021
In reply to @johnbishop "@erober80 I think the testing is different for pharmacogenetic tests. Here's some information from Mayo Clinic's..." + (show)
@johnbishop

@erober80 I think the testing is different for pharmacogenetic tests. Here's some information from Mayo Clinic's Center for Individualized Medicine on Drug Gene Testing - https://www.mayo.edu/research/centers-programs/center-individualized-medicine/patient-care/pharmacogenomics/drug-gene-testing
.

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Good point John! My results are for the Tapestry study, so the pharmocogenic tests may be different. Thank you!

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1 reply
Erin | @erober80 | Mar 13, 2021
In reply to @rashida "@erober80 is this test like the 23 and Me or Ancestry.com? Is there a cost to..." + (show)
@rashida

@erober80 is this test like the 23 and Me or Ancestry.com? Is there a cost to it, and is it available in Canada? I’ve always been curious about getting one.

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Hi @rashida - the research study is called Tapestry study. I am unsure if it is available in Canada, but the site will probably have that information and give you more details what it entails. You can search the Mayo Clinic website for Tapestry Study to find more info. Unfortunately I am unable to post links in this thread.
The company doing the sequencing for the study is Helix so you could check out their site as well! Take care!

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2 replies
rashida | @rashida | Mar 13, 2021
In reply to @erober80 "Hi @rashida - the research study is called Tapestry study. I am unsure if it is..." + (show)
@erober80

Hi @rashida - the research study is called Tapestry study. I am unsure if it is available in Canada, but the site will probably have that information and give you more details what it entails. You can search the Mayo Clinic website for Tapestry Study to find more info. Unfortunately I am unable to post links in this thread.
The company doing the sequencing for the study is Helix so you could check out their site as well! Take care!

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@erober80 thank you! I’ll check it out!

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Mentor
John, Volunteer Mentor | @johnbishop | Mar 13, 2021
In reply to @erober80 "Good point John! My results are for the Tapestry study, so the pharmocogenic tests may be..." + (show)
@erober80

Good point John! My results are for the Tapestry study, so the pharmocogenic tests may be different. Thank you!

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I think the Tapestry study only tests for these conditions. My results were negative for all three.

- Hereditary Breast and Ovarian Cancer (HBOC) - Genes analyzed - BRCA1, BRCA2
- Lynch syndrome (LS) - Genes analyzed - MLH1, MSH2, MSH6, PMS2, EPCAM
- Familial hypercholesterolemia (FH) - Genes analyzed - LDLR, APOB, PCSK9, LDLRAP1

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 13, 2021
In reply to @erober80 "Hi @rashida - the research study is called Tapestry study. I am unsure if it is..." + (show)
@erober80

Hi @rashida - the research study is called Tapestry study. I am unsure if it is available in Canada, but the site will probably have that information and give you more details what it entails. You can search the Mayo Clinic website for Tapestry Study to find more info. Unfortunately I am unable to post links in this thread.
The company doing the sequencing for the study is Helix so you could check out their site as well! Take care!

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@erober80, I noticed that you wished to post a URL to the Tapestry Study with your message. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post are not spam, so allow me to post it here.

– GENOMIC SEQUENCING: TAPESTRY STUDY https://www.mayo.edu/research/centers-programs/center-individualized-medicine/patient-care/clinical-studies/genomic-sequencing-tapestry-study

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1 reply
Erin | @erober80 | Mar 13, 2021
In reply to @colleenyoung "@erober80, I noticed that you wished to post a URL to the Tapestry Study with your..." + (show)
@colleenyoung

@erober80, I noticed that you wished to post a URL to the Tapestry Study with your message. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post are not spam, so allow me to post it here.

– GENOMIC SEQUENCING: TAPESTRY STUDY https://www.mayo.edu/research/centers-programs/center-individualized-medicine/patient-care/clinical-studies/genomic-sequencing-tapestry-study

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Hi Colleen, I figured that was the reason and totally understand! Thank you for posting, much appreciated! Take care!

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