Whole Genome Testing: 🙂 Yesterday, I gave blood... - Ataxia UK

Ataxia UK

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Whole Genome Testing

wobblybee profile image
wobblybee
•9 Replies

🙂 Yesterday, I gave blood for Whole Genome Testing on the NHS.

My Neurologist said it’s a new directive from the NHS, it came into force on 7 July.

But, an extensive consent form needs to be filled in, and arrangements to do this are pending. So, it’s likely progress re testing won’t be anytime soon..but it’s a great start 🙂

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wobblybee profile image
wobblybee
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9 Replies
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cocoa profile image
cocoa

Is this the same as the 100,000 genome project? I have already taken part in this study.

I am willing to take part in anything that may help others in the future.

😀

wobblybee profile image
wobblybee• in reply tococoa

🙂 This is something new. I had an appointment just yesterday, and only found out about it then. I’m seen in Newcastle, and today I saw a post on another group from someone taking part at Sheffield.

12monkeys profile image
12monkeys• in reply tococoa

It’s pretty much the same but this is run by nhs for diagnostic purposes not just research so hopefully more quicker results are found and passed on. I’ve been in 100000 project for years with no results

klazien profile image
klazien• in reply to12monkeys

Me the same

smiling1 profile image
smiling1

When you say it's a directive what do you mean? Directive for who? For the entire population? For anyone who sees a neurologist?

wobblybee profile image
wobblybee• in reply tosmiling1

What Is a Directive? An order is a prescription for a procedure, treatment, drug or intervention. It can apply to an individual client by means of a direct order or to more than one individual by means of a directive.cno.org › pracPDF

In this case it applies to any patient who is put forward for Whole Genome Testing.

Tazmurray profile image
Tazmurray

Hi there wobblybee did you say you go to the ataxia centre in Newcastle? I was told it had shut down?😭

wobblybee profile image
wobblybee• in reply toTazmurray

🙂Unfortunately the Specialised Neurologists relocated to do research, and existing patients were reassigned to various other Neurologists. Newcastle Ataxia Centre was only open for a few years.

Tazmurray profile image
Tazmurray• in reply towobblybee

That's crazy they were so nice & the nearest place for me to get too 😭

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