Hi all
You may want to take a look at the news item on the website about a new genetics research project that's recruiting families with ataxia of unknown cause. If you want to take part, you'll need to hurry as the researchers are hoping to take blood samples very soon - in December. The study is at University College London but it's definitely still worth enquiring if you're outside London as your GP may be able to send your sample for you.
Here's a link to more info:
I doubt if researchers at University College London will find out a practicable remedy
for ataxia of known or unknown cause
So,why give away personal data ??
Regards
Jurgen
Hi Jurgen
Thanks for your reply; it's a very good question.
You're right that this study in itself will not find a remedy for ataxia, but that isn't its stated aim. What they might be able to do is identify the gene or genes responsible for one or more ataxias for which the gene was previously unknown. This is the first step to being able to target that gene to develop treatment. They're going to be scanning the whole genome, rather than just looking at the areas of the genome that are already known to be involved in ataxia, and it's that that could lead them to new genes.
Personal data management is certainly a consideration. I would suggest contacting the research team if you are interested in taking part, as they will be able to tell you more about how the information will be handled.
All the best
Ade
Hi Ade,
I imagine that this is open only to residents in the uk? Could you confirm this for me please.
Hi wibblywobbly,
Yes, it is only for UK residents who are patients in the UK healthcare system and who have an NHS number.
Thanks for the heads-up, AdeDP! I live in the States and although I have Sporadic Cerebellar Ataxia (non-hereditary/unknown cause), no one in my family, as far back as we know, has/had ataxia, except me. I've had genetic testing for the known recessive types of ataxia, which was negative. I may have testing for the known dominant ataxia's, although there's only a 10% chance of a positive result. I'm always glad to hear of a study, as research will one day lead to a cure! ;o)
That would be splendid, AdeDP! ;o)
H Ade!
Unfortunately my close family share the same concerns as Jurgen. I realise how helpful it would be
if they would become involved but have been unable to sway them. Shortly after I was diagnosed
I donated DNA. xB
Hi wobblybee
Well don't forget that it's possible that people may still see some benefit from the study even if not taking part, for example were the research to lead to new diagnostic tests, as is hoped, that would either give a specific diagnosis or rule out a newly-found ataxia gene.
Jurgen your attitude comes across as quite selfish, identifying the origin of different types of Ataxia is a step you need before a cure can be found but in itself that would help people with a definite answer and a genetic test will hugely help those trying to claim benefits.
Anna
We've just heard from the researchers that they've been given an extension and so can collect samples until the end of February 2014. So if you're interested, it's still very much worth getting in touch with the research team to find out more.
Here's their letter, including more info and contact details:
A response to 2Sunny regarding recent posts on trehalose and nicotinamide riboside
Ataxia Clinic 
Beware the prognosis
A Positively Good Afternoon to all Ataxians .... 
