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Answered Question

prism

January 31, 2009 03:07 AM

Do you know of any place doing clinical trials on Tethered Cord related to EDS and CSI? Thanks.

EDS: Ehlers Danlos Syndrome
CSI: Cranio- Spinal Instability

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jmbrown

February 01, 2009 04:45 AM

Here's some info I found:

For clinical trials for children go here http://neurosurgery4kids.net/ntmc.htm or call the University of Utah Neurosurgical Trials Methodology Center at 801-662-5340.

ClinicalTrials.gov (http://clinicaltrials.gov/ ) is a searchable database for clinical trials. It lists a few EDS (none for CSI or Tethered Cord, yet) trials that might help you and seems like a good site to keep checking if those don't work out:

You can also try the National Institute for Neurological Disorders and Stroke NINDS (http://patientinfo.ninds.nih.gov/ ) You can fill out an Inquiry form here: http://patientinfo.ninds.nih.gov/Inquiry.aspx or contact:
NINDS - Neuroscience Center
Division of Extramural Research
6001 Executive Boulevard Suite 3309
Bethesda, MD 20892- 9531*

Clinical Trials at NewYork-Presbyterian Hospital and Columbia University: http://nyp.org/research/index.html This link takes you to a searchable database.

You may also want to try:

National Organization for Rare Disorders (NORD)
P.O. Box 1968
(55 Kenosia Avenue)
Danbury, CT
06813-1968
orphan@rarediseases.org
http://www.rarediseases.org
Tel: 203-744-0100
Voice Mail 800-999-NORD (6673)
Fax: 203-798-2291

American Syringomyelia Alliance Project (ASAP)
P.O. Box 1586
Longview, TX
75606-1586
info@asap.org
http://www.asap.org
Tel: 903-236-7079
800-ASAP-282 (272-7282)
Fax: 903-757-7456

Spina Bifida Association of America
4590 MacArthur Blvd. NW
Suite 250
Washington, DC
20007-4266
sbaa@sbaa.org
http://www.spinabifidaassociation.org
Tel: 202-944-3285
800-621-3141
Fax: 202-944-3295

ClinicalTrialResearch.org is another place to try : http://www.clinicaltrialssearch.org/ehlers_danlos_syndrome_clinical_trials.html

Good luck!
Source(s):
http://www.ninds.nih.gov/disorders/tethered_cord/tethered_cord.htm#Clinical...
http://clinicaltrials.gov/ct2/results/browse?term=Tethered+Spinal+Cord+Synd...
http://www.chiariconnectioninternational.com/question1.php#7
http://health.nih.gov/topic/EhlersDanlosSyndrome

Asker's Rating:

• jmbrown, thank you. you've really gathered several resources together for me, thanks. I've been waiting for one clinical trial from NIH for a long time now- for my EDS and oh, well- long story short- this may be my only shot at getting the help I need (without good insurance) so Bless you for helpin

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prism

February 03, 2009 02:00 PM

jmbrown, "asker's rating" should be higher than a 3 out of 5, just so you know. And had I the money, I'd certainly tip you*
Tipped- in eternity you shall be I am sure.
For my Father owns the cattle on a thousand hills~
and the stars of a zillion galaxies....
I rate you 5 out of 5 jb.
yours.
za.

Tip prism for this comment

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