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CBBF + OIF
Linked Clinical Research Center
"The LCRC's will facilitate new levels of
collaboration within the medical community and lead to improved medical care for
people with OI."
The CBBF and OI Foundation joined forces to
develop the Linked Clinical Research Centers (LCRC), a nationwide network of
doctors and medical centers with expertise in all medical facets of OI. The
coordinated effort will generate high-quality, scientifically proven medical
care from birth to old age. The LCRC will be centers of clinical and research
excellence linked together through a central database containing genetic,
radiology, and clinical data. Doctors will have access to data about clinical
care results from thousands of children and adults with OI.
In addition to providing high quality
standardized care, the LCRC, through a coordinated effort, will aim to advance
standards of care and improve treatment through clinical research. By
sharing data, the Centers will be capable of tracking how OI changes across a
lifetime, what complications are common, and which treatments are beneficial.
The first six hospitals participating in the LCRC are:
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Baylor Medical Center in Houston, TX |
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Kennedy Kreiger Institute in Baltimore, MD |
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Kennedy National Institute of Child Health in
Bethesda, MD
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Oregon Health & Science University/Portland
Shriners in Portland Ore.
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Shriners Hospital for Children in Chicago, IL
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Shriners Hospital for Children in Montreal, Quebec |
The CBBF and OIF are please to announce
that the LCRC's are now accepting patients into the "Longitudinal Study of
Osteogenesis Imperfecta." For more information please visit www.oif.org.
A few words from LCRC Partners
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“The establishment of the LCRC program will
expand the amount of available information about OI medical
problems, will undoubtedly focus attention on certain problems, and
in the long run, facilitate finding solutions.” -Jay R. Shapiro,
M.D.
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| Dr. Shapiro is the Director of the Osteogenesis
Imperfecta Clinic at the Kennedy Krieger Institute and a graduate of
Boston University School of Medicine.
“The LCRC will permit: 1) developing a large database which will be
useful both in research and patient care, and 2) permit clinicians and
investigators at several institutions to develop standards for assessing
care. These are two objectives the Kennedy Krieger programs has been very
interested in developing, and the LCRC will facilitate reaching these
goals. The establishment of the LCRC program will expand the amount of
available information about OI medical problems, will undoubtedly focus
attention on certain problems, and in the long run, facilitate finding
solutions.” |
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“I strongly believe that this network will grow and be
the vehicle for improving the health and future of OI patients throughout
the country and beyond.” - Brendan Lee, M.D., Ph.D. |
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Dr. Lee is an Investigator at the Howard Hughes Medical
Institute and Professor, Department of Molecular and Human Genetics at
Baylor College of Medicine.
“We are delighted to be awarded a founding Linked
Clinical Research Center for Osteogenesis Imperfecta. I think that it has
been well demonstrated for other clinical conditions, for example in
pediatric cancer, that coordinated multi-center clinical research networks
are the only and most effective way for developing novel treatments and
management approaches for diseases. I strongly believe that this network
will grow and be the vehicle for improving the health and future of OI
patients throughout the country and beyond. The network will be critical
for testing new treatments as well as for answering important clinical
questions in an organized and scientifically rigorous fashion.” |
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“The OI community will benefit by way of improved
continuity of care, easier access to patient registries and
clinical research, and communication with a coordinator when they have
question or concerns for their OI specialist.” - Robert D.
Steiner, M.D. |
| Robert Steiner is the Professor of Obstetrics
& Gynecology and Biology.
“The OI Linked Clinical Research Centers program will
have an almost immediate positive impact on my practice. We see
individuals with OI at three different sites: Doernbecher Children’s
Hospital, OHSU Hospital, and Shriners Hospital Portland. The LCRC funding
will allow us to hire a coordinator for our entire OI program. “This
will allow us to more easily transition patients from pediatric to adult
clinics at the appropriate time, to easily refer patients back and forth
between the two pediatric clinics when necessary, and to participate in OI
registries and clinical research related to OI. “The OI community will
benefit by way of improved continuity of care, easier access to patient
registries and clinical research, and communication with a coordinator
when they have question or concerns for their OI specialist. The
coordinator will be able to assist the patients by either answering their
questions or facilitating contact with the OI specialist to answer the
questions. Finally, the OI LCRC program provides the framework for large
collaborative multi-center clinical research in OI that was previously
tremendously difficult to carry out. The ability to catalyze clinical
research in OI should allow therapies to be tested more readily, and
ultimately for new treatments to reach the OI community.” |
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