Thanks for the info. I emailed them with the email they provided but I don't think I have as bad a case as most people so not sure they would even contact me. We'll see what happens.
I'm trying to decide between staying with the NS that is near me or to do this study.
Here is some contact information if anyone needs it.
Patient Recruitment and Public Liaison
National Institutes of Health Clinical Center
Bethesda, Maryland
Call: 1-800-411-1222(TTY: 1-866-
411-1010)
Hours: Monday- Friday 8:30 AM-3:30 PM (EST), except Federal holidays About the NIH Clinical Center: http://clinicalcenter.nih.gov Clinical Study Information: http://clinicalstudies.info.nih.gov
I requested info from their listed email they gave.
Does anyone have the phone # for the clinical trial?? Can't seem to find it..thanks!
Thanks so much just gave the info to my daughter who need's to look into this. Thanks again. :) Linda
Thanks for letting us know about the new recruits.....I posted a thread about the clinical study a while back.....but this is great to know : )
Where do you have to fly to and how often? Would love to do this, but I have school aged children so, don't know if I would be able to work it out?
This study is recruiting new patients
http://clinicalstudies.info.nih.gov/cgi/wais/bold032001.pl?A_10-N-0143.html@chiari
I'm thinking about contacting them.
Dawn :)
I believe the NIH study (in Bethesda, Maryland) is different than the Miami study although funding for both may come from the same source. It's great that there is research going on in lots of places. As far as the "perks", it was simply given to me, and I didn't have to ask for it. I was very impressed with the efficiency of the whole process at the NIH, given its the government. Very little bureaucracy! Really a nice surprise. The people I met with were all very kind and professional.
Best of luck!
I am participating in a Chiari study with Univ of Miami. Not sure if this is the same study, but I was also told it was funded by NIH. I had a MRI the day before surgery and will have another at my 12 week post-op appt. I was happy to participate, it is promising that more research is being done and CM is being taken seriously.
BTW- wish I would have known about the perks :)
Good luck to all awaiting a call to be a part of the study. : )
I just got an email back from them and called. I was told that (dont remember her name) would be calling patients in the next 10 days and I would be given more information on the trial and information would be taken. Was also told that I could accept or decline from there. Hope that means good things. I didnt have a syrinx found in my head and neck MRI but no scan was done any lower, nerve pain and symptoms have increased since then and it has been over a year since those scans were done. So many are worse off than me. I want to have some hope with this as my life has changed in the last 2 years but I unfortunately have had too many people just put me on the back burner. Oh well. I still have my fingers crossed.
I sent an email first and received a phone call a few days later asking me to send them a copy of my most recent MRi. Within 2 weeks they were asking me to participate and arranging the travel. My syrinx is huge so maybe that's why they moved quickly.
Good luck. Let me know!
How long until they get back to you if they will accept you or not. Not holding my breath but would like an idea of when. Thanks lydelia. I will call them in the am.
Jen
Thanks for the info.I have been reading up on this and It sounds like a good study.
Ray
I did the same thing. There are toll free numbers you can call too. I might do that in the morning.
The site for all the studies being done on chiari is http://clinicaltrials.gov/search/term=Chiari%20Malformation
Thanks for sharing that info : )
Thank you for the info. I sent an email but am not sure if that was the right way of letting them know I am interested. If I should do that some other way please let me know. Have a great day!
Jen
Oh, and you don't have to be a US citizen to participate.