Initial report of the osteogenesis imperfecta adult natural history initiative

  • Laura L. Tosi (Creator)
  • Matthew E. Oetgen (Creator)
  • Marianne K. Floor (Creator)
  • Mary Beth Huber (Creator)
  • Ann M. Kennelly (Creator)
  • Robert McCarter (Creator)
  • Melanie F. Rak (Northwestern University) (Creator)
  • Barbara J. Simmonds (Creator)
  • Melissa D. Simpson (Creator)
  • Carole A. Tucker (Creator)
  • Fergus E. McKiernan (Creator)



Abstract Background A better understanding of the natural history of osteogenesis imperfecta (OI) in adulthood should improve health care for patients with this rare condition. Methods The Osteogenesis Imperfecta Foundation established the Adult Natural History Initiative (ANHI) in 2010 to give voice to the health concerns of the adult OI community and to begin to address existing knowledge gaps for this condition. Using a web-based platform, 959 adults with self-reported OI, representing a wide range of self-reported disease severity, reported symptoms and health conditions, estimated the impact of these concerns on present and future health-related quality of life (QoL) and completed a Patient-Reported Outcomes Measurement Information System (PROMIS®) survey of health issues. Results Adults with OI report lower general physical health status (p 
Date made available2015

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