Debbi/Re: FW: NIH Ehlers-Danlos, Marfan, Sticklers Study Information

[Guest guest]

Yea Debbi!!!!

You're in too!!!! Great, I'm so glad fro each of you that gets in! Congrats!

Love, S.

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

> >

>

>

>

>

> To learn more about EDS, visit our website: http://www.ehlersdanlos.ca

>