Is this the same NIH study?

[Guest guest]

Is this the same study as the ones others are going to NIH for?

Clinical and Molecular Manifestations of Hereditary Connective Tissue

Disorders

IRB #: 2003-086

Principal Investigator: Clair A. Francomano, MD

Purpose: To investigate cardiovascular, pulmonary, and musculoskeletal

disease, and pain and quality of life issues in Marfan, Ehlers-Danlos, and

Stickler syndromes, and closely related disorders.

Site:

National Institute on Aging, NIH

Clinical Research Unit, NIA, Harbor Hospital

3001 S. Hanover St.

Baltimore, MD 21225

Procedures:

· Review of medical records

· History and physical exam

· Opthalmology examination

· Echocardiogram

· 12-lead ECG

· ECG Holter Monitor (12-24 hours)

· MRI of spine and aorta

· 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 (Marfan's patients only)

· Clinical Photography

· Pregnancy test (urine)

· Cognition test (a test of ability to think and remember)

Time: The study takes two days and patients may stay at the hospital during

the two days of testing.

Costs: Meals and lodging are provided at the hospital. Travel costs are

currently the responsibility of the participant, however, the study

coordinators are working to get another agency to fund travel for those who

need it.

Contacts: If you are interested in participating in the study or would like

more information, please contact:

· Nazli McDonnell MD, PhD by email at: McDonnellNa@...

· Clair A. Francomano, MD at .

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