Because no cure exists for OI, current treatment is aimed at preventing or correcting symptoms. At Kennedy Krieger Institute, however, research on improving current treatment regimes and understanding the natural history of OI is well under way. In addition we are a member of the Brittle Bone Disorders Consortium, an international collaborative better understand the natural history of OI.

A sampling of our research topics and interests include:

The Brittle Bone Disorder Consortium – Longitudinal Study in Osteogenesis Imperfecta

  • Summary: A multi-site study to collect longitudinal data in participants with OI.
  • Status: Ongoing

Multicenter Study to Evaluate Safety of Fresolimumab in Adults with Moderate-to-Severe Osteogenesis Imperfecta

  • Summary: A multi-center phase I study to ascertain safety of fresolimumab, a TGF-beta antibody therapy
  • Status: Awaiting IRB approval

The Utilization and Efficacy of Physical Therapy Services for Individuals with Osteogenesis Imperfecta

  • Summary: To determine how physical therapy services are being used by individuals with OI and how adequate these services are for individuals with OI
  • Status: Ongoing

Longitudinal Growth Patterns in Osteogenesis Imperfecta

  • Summary: To describe longitudinal growth parameters for patients with OI that are followed at KKI.
  • Status: Completed

Bisphosphonate Treatment in Adults with Osteogenesis Imperfecta

  • Summary: A retrospective chart review to assess the effect of bisphosphonate use in adults with OI.
  • Status: Completed


Germain-Lee EL, Brennen FS, Stern D, Kantipuly A, Melvin P, Terkowitz MS, Shapiro JR. Cross-sectional and longitudinal growth patterns in osteogenesis imperfecta: implications for clinical care. Pediatr Res. 2016 Mar;79(3):489-95

Shapiro JR, Thompson CB, Wu Y, Nunes M, Gillen C. Bone mineral density and fracture rate in response to intravenous and oral biphosphonates in adult osteogenesis imperfecta. Calcif Tissue Int. 2010 Aug; 87(2): 120-9.

If you would like to collaborate or dialogue regarding research endeavors or potential topics relevant to OI research, please contact us. We look forward to hearing from you and assisting you with your OI research efforts.