advances in knowledge

[Guest guest]

Hi,

I just wanted to pass on that they have identified the complex set of genes that cause JRA.

They are looking for 600 families to give blood.Parents and siblings only but siblings do not have to.It's only going on at 2 sites in the US and they are trying to determine the triggering factor.I know Cincinnati children's is one of them.

is going in for his last 3yr Enbrel study visit next month and while we are there we are going to enter this genetic study.

They contacted me today and will be in touch again but I found it very intersting that when I made the comment"I know this will not directly benefit but hopefuly others in the future"I was told this will benefit him because they are looking at genomes and his full DNA.Questions to ask for sure! It's a 1 x blood draw.

Anyway for those that do not know about CARRA(Childhood Arthritis & Rheumatoligy Research Alliance)they are trying to install a protocal just like for childhood cancer.

They desperately need children enrolled in trials and not just drug trials to learn why and how JA happens.

They have come a long way but still have a long way to go.

The success rates for cancer have gone from a survival rate of under 50% to around 85% because of all the studies and research.

I know on Cincy's website it says the childs blood can be collected duiring a routine visit there but parents and siblings can have it done localy and sent to them.I will find out if a personal visit is neccesary or if things can be handled over the phone and records faxed to them.

This kind of stuff is realy important and I can tell you just a few yrs ago I would never have imagined 1 of my children in any kind of drug or medical study.

Thanks for reading.

Becki and 6 systemic