Osteogenesis Imperfecta Clinic

Kennedy Krieger Institute • 801 North Broadway • Baltimore, MD 21205

Directors:

Jay R. Shapiro, MD
Director, Osteogenesis Imperfecta Clinic

Emily L. Germain-Lee, MD
Associate Director, Osteogenesis Imperfecta Clinic

About Our Program:

To address osteogenesis imperfecta's (OI) complex implications, the Osteogenesis Imperfecta Clinic at Kennedy Krieger Institute comprises an interdisciplinary team of medical professionals. This comprehensive team ensures a thorough evaluation of patients' individual needs. Patients can choose to receive consultation at the OI clinic at Kennedy Krieger Institute on a one-time or as-needed basis. Or, patients can receive continuous follow-up care.

Initial evaluations involve the following experts:

An endocrinologist assesses patients' medical status and makes treatment and medication recommendations
An orthopedic surgeon determines surgical needs and, if necessary, performs corrective surgery
A radiologist to measure bone density
A physical therapist to offer therapeutic interventions and assists with mobility issues and activities of daily living
A physiatrist assesses the need for improving function and offers recommendations for bracing, therapies and exercises

Services offered at the clinic include the following:

Biochemical testing
Genetic analysis and counseling
Growth parameters
Referrals for bone densitometry, a noninvasive technique that measures bone density
State-of-the-art treatment aimed at increasing bone density and decreasing fractures
X-rays, as required for diagnosis and treatment

OI patients can also take advantage of the following complementary services offered at KKI:

Audiology: Evaluates patients for hearing loss (common in individuals with OI)
Nutrition: Makes dietary recommendations to maximize bone strength
Orthotics: Fits patients with braces
Social Work: Provides services for patients and families who need support coping with OI
Out-of-State Consultation Service: Works with patients' local physicians to implement appropriate treatment protocols

Primary Program Goals:

Diagnosis and treatment of children and certain adults with Osteogenesis Imperfecta and related heritable disorders.

Hours of Operation:

Multidisciplinary clinics are held Tuesday through Friday afternoons of each month. Patient appointments are scheduled on an as needed basis, daily.