Guest guest Posted July 28, 2004 Report Share Posted July 28, 2004 OK, I finally found it! Whew! Here is the webisite that describes it: http://clinicaltrials.gov/ct/show/NCT00001641?amp;order=1 Love Lana > , > > It's not posted on the NIH website, but it's active and quite a few people > here have been involved already - perhaps someone can step forward and give > us the title of the study? > > Regardless though, please do write Dr. Francomano and tell her about > yourself, she's wonderful, kind and thorough, and she'll respond to you. > > Jill > > > Jill -- would you locate the study protacols number for us - Or tell > us the name of the study please ? I'm new to your group - and > just searched the NIH listings for either " ehlers danlos " ( no > results ) and " connective tissue " - where none of the results > returned seemed related to EDS . > > My local rheumatologist is currently searching for a specialist to > refer me too , and I have been assisted by Dr Heiss a chiari > neurosurgon at NIH previously as someone already in an odd > pickle with both chiari and multiple sclerosis confirmed prior to > my additional eds diagnosis . I'd love to gain help on the EDS > overlay from NIH - they were VERY helpful in my prior quandry ! > > thanks - I wish I could have found the study you mention on my > own -- deep sighs - at least I tried ! > > in Paradise > '' Quote Link to comment Share on other sites More sharing options...
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