got a call from genetics yesterday they want dd to be put in for reserch!

[trace2]

anyone else dd/ ds been put forward for this kind of thing? i have said yes as we are so desperate to find out whats up with dd!

No experience, but just wanted to say well done (?) and good luck with it. I hope they can find something and give her the help she needs.

What's the research for? You should ask whether it will give any feedback on dd's problem - it may well not and have no chance of doing so (which might alter your wish for her to take part).

(sorry to be a grump but I run research projects myself and I think it's important that parents understand what they can reasonably expect to get out of a research project - hopefully -from my point of view- they would want to take part anyway, but I always want the consent to be informed).

Don't hesitate to ask the research team lots of questions.

My dd2 is also subject of research in Oxford Uni - but as saintly says, it may not be a magic cure-all, just a muddle of unintelligeable (to my untrained mind) terms and phrases.

But it seems interesting to the consultants.

dont know full information yet going to see genetics next week to find out they just needed our consent but they did say they are getting some answers from them. tbh i want answers but i don't think we will get them as dd have been told is unusual.

have you had all your initial micro-array results back? is this a spin-off?

v interesting, but as sdmrst says, if you don't know what it is, it isn't 'informed' consent, lol.

always interesting to take part in though, as long as they don't need anything too invasive lol.

DS has been put in a 'research' group by our geneticist (with our consent). Maybe it's different to yours though as our ds has had a diagnosis, but it is a rare genetic one (less than 80 people worldwide), so they'd like to basically watch him grow up and have review meetings with the geneticist to see what he can/can't do, behaviour issues, and growth concerns, etc... We've submitted pictures and had to outline everything about him (sounds like my usual paed appointment that last bit!).

I hope this will give you some answers about your dd.

completely agree with mrst and the others - you need to find out if there is anything in it for you and DD other than the rosy glow of feeling you are contributing to medical knowledge, and what sort of testing etc would be involved.

iv rang them, they said they will only use the bloods they have of dd already and tbh dont sound like they will get anywhere, thet doing things because of her being very under weight, not her main issues with the movements disorder she as, and if they find anything they will tell us. so iv still said yes i have to sign a form next week when we go to see them

Oh that sounds good trace.

yeah that sounds fine, they aren't going to be putting dd/you through any further tests etc, so if they don't find anything then you aren't any worse off.