Fwd: Re: [edsers] Re: NIH/contact/Laxity

[Guest guest]

The skin biopsy is on the list of tests. That was the only test they

didn't do on Dylan because they are positive he is type 3. There

where no scopes done. For Dylan's back and hip issues, the tests

continue at home. The will contact Dylan's Dr to let him know what

they found and what to follow up with from here, and A Dr they want

him to see at U of M. Medication is no interfered with, You bring

your own are given a locked cabinet to keep it in. If you need

additional; meds while there, they can add to yours. Dylan was given

a sleeping pill, which no Dr will give him at home. ( my request).

You can refuse any test, you can drop out at any time. They want to

see you 3 times, once every 24 months. I don't think you have to have

a Dr. No referral or papers from the Dr where asked for. I gave all

the information my self. Here is a list of the tests:

History and physical examination

Ophthalmology evaluation

Standard procedures being done because you are in this study. Not

all tests will be done for every participant. The procedures you

will undergo are checked below.

__ Echocardiogram

__ 12 -lead ECG

__ ECG Holter Monitor (12-24 hours)

__ MRI of your spine and aorta (a vessel that is

connected to your heart)

__ Bone Densitometry (DEXA scan)

__ Skin biopsy

__ Blood collection for DNA analysis and routine

blood studies

__ Urine collection

__ Questionnaires about sleep, pain and quality of

life

__ CT scan of the lung (if you have Marfan

Syndrome)

__ Clinical Photography

__ Pregnancy test (urine)

__ Cognition Test (a test of your ability to think

and remember)

If you agree to join this study, first you will talk with members of

the research team. The team includes a medical doctor specializing

in genetics and a genetic counselor or genetic nurse. They will

answer any questions you may have. They will also ask you about your

condition, medical history and family history. With your permission

the team will review your medical records.

[edsers] Re: NIH/contact

Cindy;

Thank you for the information for the EDS study.

Were there any skin biopsies or scopes done?

For the nerve impingement and leg and hip issues; what types of

tests are

going to be done? Who does the tests? (do you return to have the

tests

done or do they ask someone to do it locally?)

As research protocol; is there a commitment to take a medication or

be

treated in a certain manner in the future? Do they ask you to

return every

year or so?

Do you have to have a doctor to be seen?

Thank you in advance for these answers.

You must do the thing you think you cannot do.

- Eleanor Roosevelt