NIH study?

[mom24pandas]

Hi…new here but have been lurking for a month or so since we first began to think our ds10 might have PANDAS. Wondering if anyone knows anything about this study, or have experience participating?

 

http://clinicaltrials.gov/ct2/show/NCT01778504?term=swedo&rank=1

 

It looks to me like a diagnosis and testing study only--no treatment but the testing may confirm a PANDAS dx if that is warranted. Is that correct, and does anyone have any thoughts or experience about the pros and cons of enrolling in this vs going to one of the PANDAS docs? I was intrigued by the idea of having Dr. Swedo's team take a look at our kids…and we are also a little concerned about the costs of dx, as our dd8 is also showing some signs of PANDAS…so in the back of my head I am thinking about doubling everything we had budgeted for office visits, consults, etc…Any thoughts or more info? Thanks to all of you for all the info that has been shared here…truly a lifeline for us as we have tried to figure out what is going on over the past few weeks….

[pr40]

i assume you know that there was that other PANDAS study of IVIG treatment that just concluded. there is a recent post that includes stories of two participants. This study is a study of genetic background and its influence. Good to see that NIH is continuing the work but this is just an observational study and will not include treatment.

[PowPow]

thanks for posting about this trial, though. Did not even know it existed. we have a few siblings affected (some recovered) and are local to NIMH, so I just sent an email off to Dr Swedo. Thanks!

[JoyBop]

Im not sure about this study, but for the last study travel expenses were covered. Maybe someone who participated could chime in. I would recommend you send an email to the address listed on the webpage and include your phone number. Dr. Swedo's NP should call you back very quickly and interview you and explain all that is involved. If you are not a good candidate for the study they will usually give you some advise as to how to proceed. Dr. Swedo's office is incredibly responsive.