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Before deciding to participate in a research study, please review information on Participating in a Study and the fact sheet Medical Research Clinical Trials. It is always a good idea to discuss any changes to your health care program with medical professionals who are familiar with your health history.
Studies Currently Enrolling Participants.
Children with OI
OI Nutrition Study
Three medical centers will be collaborating on this study to evaluate the effect of diet on growth rates and bone mass in children who have OI--the Kennedy Krieger Institute, Baltimore, MD, the duPont Hospital for Children, Wilmington, DE, and the Children's Hospital, Philadelphia, PA. The Kennedy Krieger Institute is currently recruiting participants. Participants will be asked to complete surveys about their child's diet. There is no charge for participation.
Eligibility: Children 2-10 years of age, with a diagnosis of osteogenesis imperfecta are eligible to participate.
For more information: Contact Pamela Melvin, RN at (443) 923-2707 or visit Kennedy Krieger Nutrition Study.
Adults with OI
Teriparatide (©Forteo)
Several centers across the United States are participating in a study on the effectiveness and safety of teriparatide (©Forteo) as a treatment for adults with OI. This drug is currently approved by the Food and Drug Administration for use by adults with osteoporosis. It is taken as an injection once a day.
Eligibility: Adults age 18-85 years old, who have not been taking any medications that could affect bone density for the past 12 months.
For Information about this study click on one of these links:
The Kennedy Krieger Institute, Baltimore, MD trial.
The Oregon Health Science University, Portland, OR trial.
Ongoing Studies
Bisphosphonates
Bisphosphonates continue to be studied as a treatment for infants, children, and adults who have OI. Questions about the most effective dose and long term use remain to be answered. The OI Foundation’s Medical Advisory Council encourages anyone who is interested in using these drugs as part of managing OI to either participate in a clinical trial or to have their doctor correspond with an OI researcher. Many of the programs listed in the Clinic Directory are studying the use of bisphosphonates as a treatment for OI.
OI Registry
The OI Registry promotes research into OI and connects members with studies.
Additional information is available by contacting the Foundation at (800) 981-2663 or bonelink@oif.org.
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