New onset cases

[norcalmom]

I got a message from Diana Pholman at the Pandas Resource Network. She wanted me to let you all know that she recvd message from Leckman....they will be opening the new pandas study in a few weeks. They are looking for NEW onset cases - only 12 year and under allowed. No steroid use prior to entrance to study.

The NIMH will have information on screening for participation. Watch their website over the next few weeks.

 

This is the study that Swedo and Cunningham will also be involved in. It will be very similar to the original study done 20 years ago, and participants will be receiving IVIG.

[browneyesmom]

THANK YOU for this update! I am so glad there is more research in the works!

 

New onset... meaning, how recent? No steroids prior meaning... how recently? What if it's been months?

[thereishope]

Thank you for posting this! So are they actively recruiting now? I don't know if "opening the study" means public recruitment begins then or if that's when they start the actual study and they already have some participants.

[butterflymom]

=

Edited February 3, 2016 by tampicc

[norcalmom]

I think NEW means - very NEW. And no means ..never. And, no not recruiting yet - just keep your eyes open for it. Thats all I know! I will keep you posted as I hear more on where to contact NIMH-Yale researchers as it comes out - but if someone is new, and meets that criteria above, I'd be watching the NIMH pandas page. At the top of the page it say "PANDAS studies are no longer recruiting patients" I'd imagine it will change. And sending an email to their general inbox might not hurt either.

[VickyLH]

I had glanced at this study a few weeks back and the only thing that made me feel apprehensive about enrolling was the fact that it appears to be a blind placebo study. Scientifically speaking, I totally understand the need for this, but I'd hate to think my son would go through invasive procedures that would likely not benefit him. Does anyone else know the details of this study? Am I correct in thinking that the control group will receive a placebo IVIG? I'm going to try to find out more information from the NIMH website because I'm pretty certain my son would qualify for the study since we haven't started any for of treatment other than a standard course of antibiotics for his recent Strep infection.

 

Hmmm, I can't seem to find the study description I thought I looked at prior to Christmas. Does anyone know the link? Perhaps I'm confusing it with another study.... I'm certainly suffering from information overload at this point.

 

Thanks

Vicky

Edited January 16, 2011 by VickyLH

[Iowadawn]

I had glanced at this study a few weeks back and the only thing that made me feel apprehensive about enrolling was the fact that it appears to be a blind placebo study. Scientifically speaking, I totally understand the need for this, but I'd hate to think my son would go through invasive procedures that would likely not benefit him. Does anyone else know the details of this study? Am I correct in thinking that the control group will receive a placebo IVIG? I'm going to try to find out more information from the NIMH website because I'm pretty certain my son would qualify for the study since we haven't started any for of treatment other than a standard course of antibiotics for his recent Strep infection.

 

Hmmm, I can't seem to find the study description I thought I looked at prior to Christmas. Does anyone know the link? Perhaps I'm confusing it with another study.... I'm certainly suffering from information overload at this point.

 

Thanks

Vicky

My hope is the results will be Sooooo convincing very early on that the placebo kids will get offered the IVIG. Sometimes this happens. AAlso, Sometime studies will reverse the double blind placebo so that the placebo gets the real stuff & the real stuff gets the placebo. I hope hope hope there is something in the study to allow this. Just talking outloud. Dawn

[thereishope]

I extensively searched for info on this study when I saw they also listed studies that will be enrolling in the future. I didn't see anything. There was a study for IVIG for SC. Could you have looked at that?

 

 

I had glanced at this study a few weeks back and the only thing that made me feel apprehensive about enrolling was the fact that it appears to be a blind placebo study. Scientifically speaking, I totally understand the need for this, but I'd hate to think my son would go through invasive procedures that would likely not benefit him. Does anyone else know the details of this study? Am I correct in thinking that the control group will receive a placebo IVIG? I'm going to try to find out more information from the NIMH website because I'm pretty certain my son would qualify for the study since we haven't started any for of treatment other than a standard course of antibiotics for his recent Strep infection.

 

Hmmm, I can't seem to find the study description I thought I looked at prior to Christmas. Does anyone know the link? Perhaps I'm confusing it with another study.... I'm certainly suffering from information overload at this point.

 

Thanks

Vicky

[airial95]

I called not too long ago to find out information. What I was told is that participants have to be at least 4 yrs of age (which rules out my son, at least until the fall).

 

Yes, a control group gets a placebo, but from what I was told, after the study is complete, they will offer/provide IVIG for the kids in the control group so everyone gets treatment.

 

I don't know more details than that, since my son wasn't eligible b/c of his age. Just thought it might help.

Edited January 17, 2011 by airial95

[norcalmom]

It isn't posted yet. ITs coming....a few weeks. Leckman talked with Diana, who asked me to post the status. It was supposed to start in January, but looks now like it will be Feb.

 

Yes - both the placebo group and the IVIG group will be treated.(palcebo won't get IVIG until a while into it - I don't know how far (1-2 months?)- assuming they will need positive results from the IVIG group to break do that of course.