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news News Wednesday, September 27, 2017 Sunday, November 12, 2017 12:56 PM - Sunday, November 12, 2017 12:56 PM

Tampa Shriners Hospital accepting children with ostegenesis imperfecta for study

Goal is to improve quality of life for kids with brittle bone disease

Shriners Hospitals for Children — Tampa has been selected as a clinical center for the “Longitudinal Study of Osteogenesis Imperfecta”, a project sponsored by the Brittle Bone Disorders Consortium under the Rare Diseases Clinical Research Network, funded by the National Institutes of Health.

This natural history study, with oversight by National Institutes of Health and the Osteogenesis Imperfecta Foundation, enrolls and follows children with osteogenesis imperfecta (OI) for many years to identify areas of research needed to improve care and treatment.

Danielle Gomez, M.D., who leads the OI program at the Tampa Shriners Hospital, is the principal investigator for this study. Enrollment to this study is currently open. The Tampa Shriners Hospital study is limited to people 18 years old and younger.

For additional information, contact research coordinator Margaret Gross-King, R.N., M.S. Osteogenesis imperfecta is a rare disorder, seen in both genders and all races that causes bones to break easily, often without trauma.

About the study

Researchers will collect information including:

  •  medical history
  •  number of broken bones
  •  surgeries done
  •  medications taken
  •  ability to walk
  •  pain
  •  lung function and breathing
  •  hearing
  •  bone mineral density

The overall goal is to improve the health and quality of life of people with OI.

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