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Osteoporosis Resource Center to Increase Outreach Through Group Effort

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By News release • • April 4, 2000

The NIH Osteoporosis and Related Bone Diseases~National Resource Center, which will amass, develop and disseminate information on a variety of bone disorders, was funded on Sept. 30 under a cooperative agreement with a consortium of three voluntary organizations by the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) and six other agencies of the federal government's Department of Health and Human Services (HHS).

The cooperative agreement maximizes the government's osteoporosis and related bone disorder outreach efforts by linking with those of the National Osteoporosis Foundation, the Paget Foundation for Paget's Disease of Bone and Related Disorders and the Osteogenesis Imperfecta Foundation. In addition to NIAMS, federal partners include the National Institute of Child Health and Human Development, National Institute of Dental Research, National Institute of Environmental Health Sciences, National Institute on Aging, the NIH Office of Research on Women's Health and the HHS Office of Women's Health. First-year funding of this 5-year agreement totals $600,000.

"With the ‘graying' of our population, we may be staring at a steep rise in hip and other fractures," said NIAMS Director Stephen I. Katz, M.D., Ph.D. "Better diagnosis, treatment, and especially prevention of osteoporosis are clearly needed. The resource center's educational potential in this task is enormous."

The resource center, headquartered in Washington, D.C., was first established 5 years ago in response to congressional interest, and will be led by Bess Dawson-Hughes, M.D., of Tufts University, Boston, Mass., an eminent bone endocrinologist and osteoporosis expert. It will carry out a national educational and information program that will:

? make research-based information available via phone, fax, e-mail and the World Wide Web and explore new ways to communicate.

? document educational barriers and test strategies for health professionals to better identify, diagnose and treat osteoporosis and related bone diseases.

? target high-risk populations and address access-to-care issues, including cultural, language and educational barriers in specific populations.

? design, implement and evaluate bone diseases education and information programs in several regions of the United States.

? organize working groups of medical experts and consumer representatives to review data and prepare publications relevant to osteoporosis and related bone diseases education.
Osteoporosis, or porous bone, is a disease characterized by low bone mass and structural deterioration of bone tissue, leading to bone fragility and increased susceptibility to fractures of the hip, spine, and wrist. It is a major public health threat for 28 million Americans, 80 percent of whom are women. In the United States today, 10 million individuals already have osteoporosis, and 18 million more have low bone mass, placing them at increased risk for the disease. One out of every two women and one in eight men over 50 will have an osteoporosis-related fracture in their lifetime.

Paget's disease and osteogenesis imperfecta, as well as other bone diseases, also present significant problems, and are included in resource center efforts. Paget's disease is a chronic disorder that typically results in enlarged and deformed bones in one or more regions of the skeleton. It is rarely diagnosed in people under 40, but may occur in 1 to 3 percent of persons over 60. Both men and women are affected. Osteogenesis imperfecta (OI) is a genetic disorder characterized by bones that break easily, often from little or no apparent cause. There are at least four distinct forms of OI, representing extreme variations in severity and affecting approximately 30,000 people in the United States.

In the past decade, there have been extraordinary advances in understanding basic bone biology, leading to targeted approaches in preventing and treating osteoporosis and several related bone diseases. Wide application to clinical care, however, has lagged behind. Further education of health care professionals, patients, and the public is needed, particularly in teaching osteoporosis prevention to children and adolescents.

Source: The National Institute of Arthritis and Musculoskeletal and Skin Diseases

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