EA1: Ji I'm still waiting for results from the... - Ataxia UK

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anihol profile image
11 Replies

Ji I'm still waiting for results from the 100000 genome test.....has anyone heard back yet if you took part?

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anihol profile image
anihol
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11 Replies
cocoa profile image
cocoa

No … I was enrolled about 18 months ago … fingers crossed for something soon, even if it is that they have found nothing.

anihol profile image
anihol in reply to cocoa

I know the waiting is really beginning to annoy me...I had a letter earlier in the year that said hopefully most people will have had their results by July.....I hope my consultant hasn't had them and just not let me know

cocoa profile image
cocoa in reply to anihol

I had that same letter but assume if there is nothing to report but they will keep looking

Grapes12 profile image
Grapes12

I have had contact I've been on it for over 2 years but no results as of yet.

wobblybee profile image
wobblybee

🙂 You can find various information by logging onto..

genomicsengland.co.uk

On the Home Page..Click on ‘Information for Participants’ and select from some options.

Kirsty34 profile image
Kirsty34

My husbands came back recently and see professor Giunti on Thursday. They fund nothing from this test.

Baysch profile image
Baysch

Me and my husband both have a type of CA, we haven’t heard anything. I bought it up with my neurologist last week as we enrolled in 2011!

12monkeys profile image
12monkeys

Depends when u were put on the scheme my Doc has had patients involved over 5 years who have only just got results. As it’s primarily a research project the results for patients isn’t the top priority, I heard the NHS are getting involved soon to help speed up results. I have been involved for 18 months and don’t expect any answers soon

Cupcake12345 profile image
Cupcake12345

My neurologist heads the genome project and told me in May they had started contacting people, the first being where they found something. I still haven’t heard for me.

winch profile image
winch

I received a letter from my Neurologist in August saying he had received the result from the 100,000 genome project. It said that the whole genome sequencing has been completed and that in my case the primary analysis had not identified a clear underlying genetic cause of my clinical presentation.

My Neurologist has discussed the result with the geneticists reporting the results and will discuss this with me at my next annual appointment with him in November.

In my case no definite result! I hope you have better news.

Missile profile image
Missile

I took part in 2014. Still no results