Re: Fw: NIH Ehlers-Danlos Study/Betty

[Guest guest]

Hi

Thanks for the info. I will contact them but can it be done by phone as I do

live in Canada (Alberta) and it would be impossible to get there. Also I am

on th elast couple of antibiotics but this cough is hanging on and last

night my throat was very sore so much I had to take Tylenol 1's. Better

today but I am so tired of feeling crappy. Hopefully by the weekend things

will turn around.

Betty

FW: NIH Ehlers-Danlos Study

>

>

>> > 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 few days, we have received many emails and calls from EDS

>> > patients asking about the study. We will be calling you within the next

>> > week or two 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.

>> >

>> > 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

>> >

>

>

>

>

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

>

[Guest guest]

Betty,

Yes you can call Dr. McDonnell, try the phone number I gave you first, then

the second one, but they really need you to e-mail stuff in return.Please

call them ASAP, and talk also about unable to afford the flight, they may be

able to help you or refer you to someone that can.

I hope you feel better soon!

Love, S.

FW: NIH Ehlers-Danlos Study

> >

> >

> >> > 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 few days, we have received many emails and calls from

EDS

> >> > patients asking about the study. We will be calling you within the

next

> >> > week or two 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.

> >> >

> >> > 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

> >> >

> >

> >

> >

> >

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

> >