FW: NIH Ehlers-Danlos, Marfan, Sticklers Study Information

[Guest guest]

Hi guys!!

I just got this!

It is a bit different than the others that have been sent.

Trying to warn us that they are really busy!

At least they have my info...

I think I am 1/2 way there!

YEA!

************

NIH Ehlers-Danlos, Marfan, Sticklers Study Information

> Thank you for your interest in our Clinical and Molecular Manifestations

> of Hereditary Connective Tissue Disorders. The purpose of the study is to

> investigate cardiovascular, pulmonary, and muscularskeletal disease and

> pain and quality of life issues with Marfan, Ehlers-Danlos, Stickler

> syndrome or another closely related disorder.

>

> Over the last week, we have received many (over 50) emails and calls from

> EDS, Marfan, and Sticklers patients asking about the study. We are in

> different stages of contact with each of you, please be patient as we have

> many issues to attend to during the day. We will be calling you within the

> next two weeks to schedule you for the study if you are interested in

> participating.

>

> The study takes place in Baltimore, land at Harbor Hospital NIA-ASTRA

> unit on the 5th floor. The directions to the hospital can be found at www.

> HarborHospital.org. The phone number of the NIA unit is .

>

> Typically during the two day visit to the NIA-ASTRA unit patients have a

> thorough history and physical performed, an ECG, a 24-hr Holter, a DEXA

> scan, a MRI of the lumbosacral spine and aorta, a routine urinalysis, a

> CBC, Complete Chemistry Panel (including lipids), Thyroid function tests,

> CRP, IgE, bone chemistries, fibrinogen, parathyroid hormone and a sample

> of store for serum and DNA analysis. In addition the patients complete a

> number of questionnaires used to assess quality of life, sleep, and pain.

> We have attached the consent form for the above studies and tests with

> this email. The consent form is for you to review and look over, not to

> sign and send back to us. If you participate you will sign the consent

> upon your arrival at the unit.

>

> Currently we are working on an amendment that would require more studies

> be performed while you are in the unit. This amendment will hopefully be

> approved at the end of September and at that time an additional consent

> form will be available.

>

> We are currently scheduling dates in October and subsequent months. If you

> decide to participate in the study, we will provide accommodation and

> meals for the length of your stay in our unit. You may choose to stay in a

> local hotel and provide your own meals if you wish. However, we cannot

> cover travel arrangements to and from the hospital currently.

>

> If you are still interested in participating in our study, please reply

> to: mcdonnellna@....

>

> Include the following in your email:

>

> * Home Address and phone number

> * Cell phone number

> * Emergency Contact information

> * Date of Birth

> * Social Security Number

> * Current height and weight

> * Special needs in terms of diet and ambulation.

> * If you have metal parts in your body that could

> interfere with the MRI

>

> We greatly appreciate your interest in participating in our study and look

> forward to hearing from you and hopefully, meeting with you in the near

> future.

>

>

> Nazli McDonnell MD, PhD

> Clinical Fellow

> Investigator of Lab of Genetics

> National Institute on Aging

>

> Clair Francomano MD

> Prinipal Investigator

> Senior Investiagor of Lab of Genetics

> National Institute on Aging

>