Guest guest Posted August 19, 2004 Report Share Posted August 19, 2004 They may have changed their minds since finding out that the study patients all seem to end up having some type of medical emergency while there, but Dr. F told me that they would be telling people that you can stay in a hotel if you would rather. This is the first time that they have been able to offer a place on the floor which I was grateful for too. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2004 Report Share Posted August 19, 2004 I just signed up for the study and according to the information they sent me, here are the answers to your questions. 1. The NIH study is done at Harbor Hospital in Baltimore, near Washington DC. hopefully you know where that is, it is kind of half way down the east coast. 2. the study is 2 days of tests. you stay at the hospital and food is paid for. 3. they had asked if someone was coming with me, if my husband was they would let him stay with me at the hospital and pay for his food as well. i am not sure if both parents would be covered or if just one. 4. MRI (spine and aorta), bone density, EKG, skin biopsy, heart echo, ECG, ECG holter monitor, blood collection for DNA analysis, urine collection, CT scan, clinical photography, pregnancy test, cognition test, along with questionaires, physicals, medical history. 5. they are looking for anyone with: Marfan, Ehlers-Danlos, Stickler syndromes and in closely related disorders. i hope that answers all of your questions. if not, please let me know and i will try to do a better job. hugs, jen EDS III Phoenix, AZ > Hi, after learning that the NiH study was open for worldwide > participants I had a few questions. > > 1) I am totally geographically illeterate (can't spell it either > lol) where is the study being done? Where is this close to? (How > far from southern ontario basically, or if easier for american's, > port huron is the same) > > 2) How long does the study last? Is it a standard stay or does > your visit depend on the findings? > > 3) Do they provide accomidations for parents as well as the > participant? I mean I know participant would be in the hospital, > but is there a place for someone else to stay as well? > > 4) What all tests do they do? Is it the same for all the > participants or do the tests depend on the participants condition? > > 5) Are they looking for all severities and all types? > > I think thats it. Looking forward to the answers > > Stacey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2004 Report Share Posted August 19, 2004 NiH Study questions They may have changed their minds since finding out that the study patients all seem to end up having some type of medical emergency while ....... *************************** Ya, of course we had to be the first ones they had to write a report on due to Dylan going to the ER in another hospital. The plan was to get the MRI at the other hospital an go back, but no,.... we had to cause a ruckus. The new MRI will be at the study location soon. Apparently this study was not set up for people to get sick while there, but they are learning to roll with the punches. They have had several instances now. 's boy passed out on the blood draw lady. His POTS kicked in and down he went. I'm not sure if Dylan's ER trip is going to get them in hot water or not. Our private insurance kicked in when that happened. Cindylouwho Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.