genome project: Yesterday I had my regular, yearly... - Ataxia UK

Ataxia UK

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genome project

klazien profile image
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Yesterday I had my regular, yearly appointment with the Ataxia Centre in London. Nothing new but I was asked to join the ‘100.000 genomes project’ which I did.

It is a research project held here in the UK (website: genomicsengland.co.uk ) that seems to be for those who have a neurological disease that nobody knows where it comes from. It will take years to get the results because the blood of so many people has to be looked at. They may not have an answer but I have nothing to lose

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klazien profile image
klazien
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cocoa profile image
cocoa

Let us know the outcome .... I was asked when I visited the Oxford Ataxia Centre but have heard nothing since.

klazien profile image
klazien in reply tococoa

They told me it could take years

sheild profile image
sheild

Should take about 2 years, and then they have to communicate back. I've been waiting about 18 months so far.

cjpotter profile image
cjpotter

Hi, my daughter is part of the project. We are a year and nearly 3 months into the wait. Expecting to hopefully here some news around April 2018.

My advice is you have nothing to lose and try not to become too convinced they will come back with a diagnosis or answers. But I think you have done the right thing as ANYTHING appears to be worth a try sometimes. I wish you all the best.

Carly

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