OI:Research

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:

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
PUBLICATION: Not begun yet

 


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: Ongoing
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.

Appointments & Referrals

FIND A SPECIALIST

Publications

Read inspiring stories, news and updates about the Institute's patient care, research, special education, professional training, and community programs.

 

Resource Finder

 

A free resource that provides access to information and support for individuals and families living with developmental disabilities.