and this link from clinicaltrials.gov
http://clinicaltrials.gov/ct2/results?term=%22Chiari Malformation %22
I called them and they said they were not taking new recruits at this time. But you can pre-sign up to be called for studies that open to patients in later studies. Stacey
Too bad that they won't do a study on people's family to confirm whether or not other family members have it!! That's what I need, that way I wouldn't have to worry!!
Just took a look at the link and it looks like they do have clinical trials to determine that...just not in Canada...*sigh* (That I can find anyway).
They also have a "historical" study going on that just follows the progression of syrinx and conditions predisposing u to syrinx, like chiari over 5 year period. Not sure how public that is, but I was referred into the department. Still gathering all my stuff to send in to see if I qualify. No experimental stuff but at least the treatment and MRIs they do are free. Even surgery if you need it. I would suggest calling numbers above if you are interested to see if they have any other studies u may qualify for. Not sure if they only take local people or what. Sorry I don't have much more info.
From what I understand they will fly u in if they feel u fit the criteria for the study....a few members have been involved in the past.....but that is all I know.