Is anyone taking part in the DDD study?

[Whatsthatnoise]

DD has probable congenital muscle myopathy try saying that after a few Her latest genetic testing has came back with nothing. The neurologist has suggested that the next step would be the DDD study or a muscle biopsy. He wasn't sure wether she would be eligible unfortunately her geneticist is off on compassionate leave so we are waiting to hear from one of her colleagues. Does anyone know what the criteria for DDD is?

I'm at the point where us having another child is not important so no diagnosis isn't the end of the world but I do worry about how dd will feel when she wants to have her own family. However muscle biopsy is out of the question for now, she reacted badly to GA and morphine earlier this year and I just couldn't justify another operation.

sorry for the ramble, I'm trying to make sense of all this.

Hi, you can read about the DDD study here. It sounds like your geneticists colleague will have to decide on eligibility.
We are in the study and so far all that has happened is that we (DD, mum and dad) have sent 'spit in a bottle' samples off. This was about 2 years ago, but we were told at the time it would take at least 18 months to hear anything, so we have not been holding our breaths!

It looks like I'll need to wait and see what the genetics team say.

Hopefully you'll get some results soon, I tend to double every time scale they give me