Protocol Number: 98-D-0145
Patients of any age with known or probable polyostotic fibrous dysplasia may be eligible for this study. After the initial screening evaluation, patients may be offered participation in a treatment study or may be invited to remain in this study and return for yearly evaluations with possible referral to a study at a later time. Not all patients in the study will undergo the same tests; the procedures will vary, depending on the patient's age and medical condition. They may include the following: - Blood and urine tests. - Pregnancy test for women of childbearing potential. - Hearing, eye and dental examinations, including dental X-rays and photographs, if needed. - Functional evaluation, including measurements of strength, gait, range of motion and ability to perform activities of daily living. - Pain evaluation, using written questionnaires or interview, depending on the patient's age. - Bone imaging studies to evaluate bone density, bone lesions and severity of disease over time. These tests may include magnetic resonance imaging (MRI), nuclear medicine bone scans, X-rays, bone densitometry, coned-down (magnified) X-rays, computed tomography (CT) scan, bone age study (X-ray of the hand and wrist). - Photography to document and track signs of the disease. (No photographs will be published in medical journals or elsewhere without the patient's permission.) - Bone biopsy, done under local anesthetic and sedative (general anesthetic for small children). A sample of bone tissue is withdrawn through a needle inserted into a bone. - Skin biopsy, done under local anesthetic. A small sample of skin tissue (about 1/8 inch in diameter) is removed at the time of the bone biopsy. - Ovarian function evaluation in women, including measurements of hormones in urine and saliva, and transvaginal ultrasound. - DNA (genetic) studies and possibly other research on polyostotic fibrous dysplasia, using cell lines grown from white blood cells and tissue obtained from the skin and bone biopsies. - Additional tests may be recommended to evaluate particular problems detected in individual patients.
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National Institutes of Health Clinical Center
Bethesda, Maryland 20892. Last update: 01/17/2009
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