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NIH Study

I want to alert everyone to a current National Institutes of Health research study.  They are looking for adult volunteers who have CM or SM.  It doesn't matter if you have had surgery or not for your condition.  It's a 5 year "natural history" study which means they simply want to watch people for 5 years, do MRI's every year for comparison and simply try to learn about the progression of the disease.  If surgery is warranted, they will offer it to you at no cost to you.  They even pay travel expenses if you are accepted into the study.  Go to nih.gov and click on "clinical studies" and type in the word syringomyelia or chiari and you can see the studies and see if you meet the criteria.

Can't hurt to look!  I see many of you have no access to NS's or to docs that know much about CM or SM.  I am participating in the study to learn more about my SM and to have access to surgery if I ever elect to do it.  It's been a great experience so far. I've been there twice with my husband and they pay for our flights, hotels, food, and I get to see one of the best NS in the world.  Not a bad deal.  Plus, you can quit at any time and nothing experimental is done to you.

Best of luck.
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Avatar universal
Oh, and you don't have to be a US citizen to participate.
Helpful - 0
1322693 tn?1308153896
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
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620923 tn?1452915648
COMMUNITY LEADER

  Thanks for sharing that info : )

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Avatar universal
The site for all the studies being done on chiari is http://clinicaltrials.gov/search/term=Chiari%20Malformation
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Avatar universal
I did the same thing. There are toll free numbers you can call too. I might do that in the morning.
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999891 tn?1407276076
Thanks for the info.I have been reading up on this and It sounds like a good study.

Ray
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1322693 tn?1308153896
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
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Avatar universal
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!
Helpful - 0
1322693 tn?1308153896
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.
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620923 tn?1452915648
COMMUNITY LEADER

  Good luck to all awaiting a call to be a part of the study. :  )
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Avatar universal
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 :)
Helpful - 0
Avatar universal
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!
Helpful - 0
Avatar universal
This study is recruiting new patients

http://clinicalstudies.info.nih.gov/cgi/wais/[email protected]

I'm thinking about contacting them.

Dawn :)

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1947337 tn?1331423890
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?
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  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 : )
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1306714 tn?1327257080
Thanks so much just gave the info to my daughter who need's to look into this.  Thanks again.    :)    Linda
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1947337 tn?1331423890
Does anyone have the phone # for the clinical trial?? Can't seem to find it..thanks!
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Avatar universal
I requested info from their listed email they gave.
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Avatar universal
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
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Avatar universal
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.
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