Wednesday, November 12, 2008

ClinicalTrials.Gov

When B was first diagnosed it coincided with a piece on Good Morning America about Wesley Burks at Duke and his research involving oral desensitization for peanuts (and eggs).

I was a new PA (peanut allergy) mom and I wanted to know how I could get my daughter into a trial!

And that's how I found this site. What is it?
ClinicalTrials.gov is a registry of federally and privately supported clinical trials conducted in the United States and around the world. ClinicalTrials.gov gives you information about a trial's purpose, who may participate, locations, and phone numbers for more details.
We're about 3,000 miles away from Duke, so no luck for us. Maybe you'll be lucky enough to be close to (and eligible) for one of these? Some of you out there will make it possible for widespread treatment to become a reality.

Us, we're not so lucky.

7 comments:

Bella's Mama said...

Thank you for all you do!!! I know this is off subject, but I'm really stressing, and wondering how eveyone else is handling this...have you removed soy from her diet because of the potential of cross-reactivity?

Cherie said...

I just read in my local paper that the first human trial for a vaccine against nut allergy is about to commence. Our kids may have peanut allergy but hopefully it will be unheard of in our grandkids.

Gab said...

Bella's Momma - We didn't remove soy from her diet and as far I know we didn't test for it at all (which in hindsight seems pretty stupid...). She eats soy ALL the time and hasn't had a reaction. I may just be calling my doctor after this...

Cherie - Please share the details of what you found!

Elaine said...

Wow, would love to hear the details too...

I wonder about soy with us also...My guy still is getting rashes, we have testing in December I am going to ask about soy.

dharmamike said...

Maybe Cherie was referring to this article http://www.newswise.com/articles/view/545808/ discussing human trials of FAHF-2. It certainly sounds very promising, but it's not a vaccine.

Cherie said...

No it was definitely for a vaccine (t-cell targeted vaccine)...Researcher's at Alfred Hospital, Melbourne (Australia) are planning to start the trial within 3 years (OK, it sounded like it was tomorrow but that's still soon) and are hoping to have a vaccine available within 5 - 10 years. The trial is being run by Dr Robyn O'Hehir from the Alfred's department of allergy, immunology and respiratory medicine...(if anyone is enthusiastic enough to research it further??!) The vaccine proposes to target small fragments of peanut protein which are big enough to interact with the immune system (t cells) to build tolerance but small enough to avoid anaphylaxis. Yay, here's hoping it works, if we Aussie's manage it before you guys in the US then we promise to share ;) It may be too late for our kids to benefit from a vaccine (as they already have the allergy) but the grandkids will hopefully benefit!

Cherie said...

...I wonder, maybe a vaccine could work on people already allergic to peanuts? I just assumed it would be for people who had no prior allergy but it didn't SAY that...maybe, maybe...do we dare dream that maybe OUR kids could be eligible for this vaccination? Even if it was 10 years away my son would only be 13 then and frankly, the teenage years are the ones I am most nervous about. Will let you know if any more news articles pop up...