New Research Study on Use of Teriparatide (FORTEOT) by OI Patients 6/8/2006 - A study of the effectiveness of teriparatide (FORTEO) in increasing the bone mass, decreasing fractures, and improving bone structure in persons with OI between the ages of 18 and 85 is now being conducted at the Osteogenesis Imperfecta Clinic, headed by Dr. Jay Shapiro in collaboration with researchers from the University of Oregon and Baylor College of Medicine. Teriparatide (Forteo) is currently approved by the Food and Drug Administration for use by adults with osteoporosis, but not adults with OI.
Eligibility: - Diagnosed with OI
- Between age 18-85
- Have not taken bisphosphonates (Fosomax, Actonel, Pamidronate, etc)
in the past 12 months - Able to come to the KKI clinic in Baltimore, MD every 3 months for a total of 18 months (travel assistance may be located upon request)
Jay R. Shapiro, M.D.
Kennedy Krieger Institute
707 North Broadway, Baltimore MD 21205
Email: oiregistrymanager@kennedykrieger.org
Phone: 443-923-9180
Recommendations Regarding Vitamin D Intake in Ostoeogenesis Imperfecta 3/3/06 - Because of widely different age-related heights and body weights among individuals with OI, we propose that vitamin D-3 intake be based on body weight rather than on age. Note that the Food and Nutrition Board (1997) currently recommends 200 IU/day for ages 0-50 years, and 400 IU/day for ages 51-70 years (Dietary Reference Intake). Over age 70 the recommendation is for 600 IU daily. Several investigators suggest that the daily intake at the 400-600 IU level for adults is not adequate to maintain optimal serum 25(OH) D levels at, or above, the recommended 32-60 ng/ml level, or to maintain normal parathyroid hormone or bone alkaline phosphatase levels, and by inference, normal calcium metabolism. Learn more
Osteogenesis Imperfecta Registry 3/1/2006 - An exciting new database has been developed to create an up-to-date listing of people with OI. This list contains essential information about the history and condition of individuals with OI and is directed by the individual participants consenting to participate in this database. The information supplied by participants is kept confidential and only shared with investigators doing approved research with the individual participant's consent to do so.
By sharing your information with other individuals with OI you will help stimulate further research into OI and enhance progress toward a better understanding of, and possible breakthroughs in medical treatment for individuals with OI. To get involved and participate in this research study, register here
OI Conference Update 3/6/2005 - While researchers have made great strides in understanding OI, relatively little progress has been made in terms of actually improving the quality of life for OI patients. On March 6, 2005 more than 100 experts in the field met in Baltimore to discuss strategies to advance both clinical investigations and improve standards of care for individuals with OI. Attendees spent a day and a half working towards the conferences three goals:
- identifying the major medical, rehabilitative and psychosocial concerns facing patients with OI.
- establishing an agenda for addressing some of these concerns, including proposals for needed research
- developing a group of outcome measures to be used across the OI community, including clinicians from all specialties, patients and their advocates.
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Referral Information: For more information or to make an appointment at the Osteogenesis Imperfecta Clinic at Kennedy Krieger Institute, call toll free at 1-888-554-2080 or locally at 410-923-9400.