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Osteogenesis imperfecta

Osteogenesis imperfecta

Osteogenesis imperfecta

Osteogenesis imperfecta (OI) is a rare disorder that causes bones to break easily. Children with OI may sustain broken bones from seemingly minor injuries where children without the disorder may not have a fracture. Shriners Hospitals for Children — Chicago founded the nation’s first orthopaedic OI clinic in 1943. A group of patient families from our hospital later founded the OI Foundation.

In addition to the management of fractures, we have a team of nurses, therapists, RNs and social worker care managers and other health care experts who are dedicated to helping individuals with OI succeed in their day-to-day activities. We have managed bisphosphonate medical therapy for well over 200 patients with OI since 1990.

Leaders in osteogenesis imperfecta research

Shriners Hospitals for Children – Chicago just completed a five year study of brittle bone disease as a Linked Clinical Research Center through the OI Foundation. Nearly 100 adults and children were tracked annually for medical procedures, treatment and testing. “The longitudinal study helped us fine tune some specific questions about OI, involving areas such as scoliosis, genetic testing, dental health and compression fractures in the spine,” Angela Caudill, research coordinator at Shriners Hospitals for Children — Chicago, said.

“We want all our families to know about a new national registry formed to study OI, and the upcoming opportunity for children and adults with OI to participate in research,” Caudill said. Shriners Hospitals for Children — Chicago is part of a new $6.25 million dollar OI research project funded by the National Institutes of Health. The Brittle Bone Disorders Consortium involves Shriners Hospitals for Children in Chicago, Montreal and Portland, along with medical institutions such as Baylor University, the Kennedy Krieger Institute and the Hospital for Special Surgery. “We are enthusiastic about the opportunity to learn more about this rare disorder and share information to improve care,” Peter Smith, M.D., principal investigator, said.

The Chicago Shriners Hospital recently began enrolling participants in the new research study through the Consortium. Patients who enroll will participate in annual tests such as bone density and lung function, spine x-rays, as well as provide feedback through questions about their health. Researchers hope to enroll 1,000 people nationally who have OI between all the participating testing centers.

Interested families can begin the enrollment process for an online registry at the Osteogenesis Imperfecta Foundation Brittle Bone Disorders Consortium page.

   
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