Kennedy Krieger Institute's Linked Clinical Research Center in Osteogenesis Imperfecta

Principal Investigator: Jay Shapiro

As a participant of the Linked Clinical Research Centers (LCRC), the Osteogenesis Imperfecta (or) Program at the Kennedy Krieger Institute (KKI) brings an established record of multidiscliplinary expertise in clinical care, research and education for the or community. The KKI shares firm interdepartmental relationships and abundant resources afforded by Johns Hopkins Hospital (JHH), Johns Hopkins Medical Institutes (JHMI), and Johns Hopkins University (JHU). The KKI or Program is unique in that two full-time physicians, a nurse manager, and two administrative staff are dedicated to the care experience of OI patients. The current collaboration between KKI and Alfred I. duPont Hospital for Children (A.I. DuPont) provides exceptional opportunities for sharing expertise in patient care and research in the context of the LCRC. The KKI OI Program is uniquely positioned to answer the primary objectives stated in the request for proposal: 

  • To coordinate enrollment of 40 or more people with or into the center: The OJ Clinic has seen 67 new patients year-to-date. The OJ Registry, which has 961 members, has the potential for recruiting new patients to the OJ Clinic for specific research protocols.

  • To provide the support for the creation of a database that will feed demographic and clinical data to a central coordinating site with which each LCRC must coordinate: With experience gained in the operation of the OJ Registry, the OJ Clinic effort towards the central LCRC database will be coordinated by the OJ Registry Manager.

  • To determine if mutation identification studies have been completed and should be done: in as much as mutation analysis related to OJ diagnosis has been completed for many of our patients, the KKJ OJ Clinic and du Pont programs will support efforts to expand and effectively utilize that mutation database. The KKI OI Program is braced for expansion, in light of the recent start of the KKI Bone Center and the relocation of the OI Program to the Harry and Jeannette Weinberg Building. With a nationally recognized record in clinical care, research and education for the OI community encompassing disciplines such as endocrinology, orthopedic surgery and medical genetics, the KKI and A.I. duPont collaboration brings major and diverse resources to promote the development and future operation of the Linked Clinical Centers Program.