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Here some suggested organisations that offer expert advice on SN.

Anyone else here taking part in the DDD study?

(4 Posts)
Lougle Wed 10-Aug-11 19:39:54

DD1 has been entered into the Deciphering Developmental Disorders study, run by the Sanger Institute.

They will be using cutting-edge technology to do genome mapping of 12000 children with unexplained developmental disorders/delay, over 3 years.

Apparently, DD1 has already had 40xmicroarray, but these people will use several 1000'sxmicroarray.

There are several regions in the country, and each region will be asked to put forward 500 children...so I thought that the more of you here who know about it, the better!

I think referral is through the child's geneticist.

They will report any clinically significant findings that involve developmental delay, but won't report other findings (such as the presence of the breast cancer gene, or alzheimers gene, etc.)

1980Sport Wed 10-Aug-11 19:55:49

We're hoping to - but our clinic is one of the last to sign up and get everything in place!

We're the same DS has had the lower res array! I feel it's our last hope really, they'll also be doing the gene sequencing!

1980Sport Wed 10-Aug-11 19:56:59

You already wrote the genome mapping thing, sorry read too quickly! Great article in last Wednesday's Times on genetics for anyone interested!

shaz298 Sat 13-Aug-11 07:36:18

Yip, we're in smile. Although I do think it's not fair if they find something like a cancer gene they won't tell. Poor kids have enough to deal with and if something can be prevented or caught really early then I'd rather have the info sad

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