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For Fibrous Dysplasia
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Research Studies of Fibrous Dysplasia (FD) at National Institutes of Health (NIH)

The Craniofacial and Skeletal Diseases Branch of the National Institute of Dental and Craniofacial Research (NIH) in Bethesda, MD, is conducting research in fibrous dysplasia (FD) of bone and McCune-Albright syndrome. The goals of the research are to better understand the underlying defects that lead to the disease, characterize the medical problems of patients, and develop new treatments, with the ultimate goal of developing a cure. Three studies are recruiting patients and others are planned. The first is a “Natural History” study that seeks to characterize the problems of patients with FD. For example, the effect of changes in hormone levels (puberty, menopause, thyroid disease, etc.) is still not known. By analyzing medical histories from patients, and following the patients over time with careful measures of bone and hormonal activity, these and other questions should be answered. The second is a medical treatment study that investigates the efficacy of the drug alendronate (Fosamax®) for the treatment of FD. Alendronate is currently approved for Paget’s disease of bone and osteoporosis. It can be taken orally and is the same class of drug as pamidronate (Aredia®), which has been used to treat FD in the past. The goal of this study is to determine if the class of drugs, bisphosphonates, that includes alendronate and pamidronate, are safe and effective in FD. The third is a surgical treatment study that investigates a new procedure to treat long-bone lesions at high risk for fracture. It involves the transplantation of bone marrow cells taken from a healthy bone into the bone at risk for fracture. Surgery is performed through a small incision in the skin under local anesthesia; thus recovery time is dramatically reduced. This research also focuses on bone marrow stromal cells and their use in regenerating bone. This area of tissue engineering, using cells that cause the condition, offers the greatest hope for new treatment and the ultimate hope for cure. For more information, visit the website at http://csdb.nidcr.nih.gov/csdb/
Clinical.htm
or call Ms. Beth McKinney at 301-496-4371 or Ms. Janet Jones at 301-492-1211.

 

       

 

 



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