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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. A sampling of our research topics and interests include:

Assessment of Medical and Surgical Aspects of Cardiovascular Disease in OI

• Summary

   To access the incidence and clinical characteristics of cardiovascular disease and its surgical treatment in adults with OI.

• Status

   Pending IRB approval

• Publication

   Not begun yet

Distal Femur Bone Mineral Density Measurements in Healthy Individuals and Individuals with Acquired and Genetic Bone Disorder

• Summary

   To assess the DXA bone density measurement at the distal femur and femur neck in three adult populations: healthy volunteers, OI patients and Spinal Cord Injury patients.

• Status

   Pending IRB approval

• Publication

   Not begun yet

The IBMD-OI Study

A Study to Assess the Effectiveness of Teriparatide (FORTEO) for Increasing Bone Mass and Improving Bone Structure in Adults Affected with Osteogenesis Imperfecta (OI).

• Summary

   FORTEO is approved by FDA for the treatment of osteoporosis. A clinical trial to assess if Forteo has any benefit for adults with OI. Adults will self-inject over an 18-month period and visit the OI Clinic every 3 months to be assessed.

• Status

   Data analysis is in progress.

• Publications

   Pending

The Impact of Nutrition on Bone Growth in Osteogenesis Imperfecta.

• Summary

   A clinical trial to assess the impact of nutrition factors on bone growth in children aged 2-10 with OI. Children will be followed for nutritional intake and given functional assessments at each visit.

• Status

   Ongoing.

• Publications

   Not begun yet.

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

• Publications

   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.

Bisphosphonate Treatment in Children with Osteogenesis Imperfecta

• Summary

   A retrospective chart review to assess the effect of bisphosphonate use in children with OI.

• Status

   Pending IRB approval.

• Publications

   Not begun yet.

The Osteogenesis Imperfecta Linked Clinical Research Centers

• Summary

   To assess the natural history of OI over 5 years for 100 individuals with OI.

• Status

    ongoing

• Publications

   Publications will wait for data acquisition.

The Osteogenesis Imperfecta Registry

• Summary

   To provide an up-to-date listing of individuals with OI, and to connect individuals with clinical investigators researching topics in OI.

• Status

   Ongoing.

• Presentations

   "The Characteristics of the Osteogenesis Imperfecta Registry Population": The Western Regional Meeting, January 2010 and "The Osteogenesis Imperfecta Registry": The U.S. and Taiwan Osteogenesis Imperfecta Symposium, May 2011.

Type V Osteogenesis Imperfecta

• Summary

   To assess the impact of nutrition factors on bone growth in children aged 2-10 with OI.

• Status

   Pending publication

• Publications

   Publication in progress

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.

• Contact Us
• The Osteogenesis Imperfecta Clinic
• 801 North Broadway
• Baltimore, MD 21205
• 410-923-9400