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Anyone else in the bio bank research?
 

Amumdoingherbest

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Joined: 2017-06-06 Posts: 8
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Hi, we have just signed up for our daughter to have her bloods researched by the centre for neuromuscular diseases for their rare diseases biological samples bank research.

I just wanted to see if anyone has done this and how long it took for the results and did they actually help, did they give a diagnosis, did they find anything etc?

I’m happy to be part of it I just want to be prepared for what is really going to happen for us as parents.

Thank you

25 July 2017 10:11 PM # 1

Healing Heart

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Joined: 2014-10-10 Posts: 701
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I’ve never done a voluntary blood genetics test, but was forced into one during legal litigation and I would say that it took maybe 7-8 days for results it wasn’t long at all.  I don’t know if that was because defense attorneys were scrambling to hope that my child had a genetic issue (which he doesn’t) so they sped up the results or if that is an average time line…

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25 July 2017 10:23 PM # 2

Amumdoingherbest

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Joined: 2017-06-06 Posts: 8
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O wow that was quick.

Since posting I got hold of our consultant and was told if we get accepted into the research it takes 6 weeks as they prioritise it and if not it takes 6months.

We had normal genetics and this all came back fine but this one is stripping and checking each strand of DNA or something so I guess it finds out something else especially as they wanted our bloods too? Just something completely out of my knowledge base.

I’m sorry you were forced to have to do a test. I am glad it came back not genetic although I don’t know if that was good or not for you.

Thanks for letting me know sometimes these things still say nothing as I was worrying they only did this if they knew it would come out as something wrong and they just needed confirmation if that makes sense.

25 July 2017 10:29 PM # 3

Healing Heart

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Amumdoingherbest - 25 July 2017 10:23 PM

O wow that was quick.

Since posting I got hold of our consultant and was told if we get accepted into the research it takes 6 weeks as they prioritise it and if not it takes 6months.

We had normal genetics and this all came back fine but this one is stripping and checking each strand of DNA or something so I guess it finds out something else especially as they wanted our bloods too? Just something completely out of my knowledge base.

I’m sorry you were forced to have to do a test. I am glad it came back not genetic although I don’t know if that was good or not for you.

Thanks for letting me know sometimes these things still say nothing as I was worrying they only did this if they knew it would come out as something wrong and they just needed confirmation if that makes sense.

That would be terrible to have to wait 6 months for answers.  Let’s hope they aim for 6 months.  It did kind of suck to be court ordered to do a test, but at the same time we knew they were grabbing at straws to cover up the medical negligence that indeed cost my child from being typical.  I think it probably depends on the circumstances that brought the test about.  Sometimes parents request them, sometimes doctor’s request them because they aren’t certain what they are treating or what he diagnosis should be or is…. but I have seen a lot of families go through genetics and still come back with no answers as to what is wrong.  Sometimes things remain a mystery… but hopefully the tests come back sooner or later to give you peace of mind.  There is nothing worse than waiting and waiting…

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