Frequently Asked Questions

What is the Linked Clinical Research Center

A joint initiative from the OI Foundation and the Children’s Brittle Bone Foundation, the Linked Clinical Research Centers (LCRC) are a nationwide network designed to provide the highest-quality of standardized medical care for people living with osteogenesis imperfecta. All of the LCRC sites have a multidisciplinary group of specialists with extensive experience caring for children who have OI.

In addition to providing high-quality standardized care, the LCRCs, 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.

How many people are currently enrolled?

We have over 500 children in the database at this time. This will enable clinicians to follow these patients and based on OI Type, better project prognosis, as well as treat the disease.

Because there are now LCRC Centers all around the US, patients can go to the centers and receive the most up to date and effective standard of care. Previously, patients would have to rely on their local doctor for care and treatment. Because the disease is so rare many doctors never had seen an OI patient. Therefore the care was inconsistent, and certainly not to the level required.

How does the LCRC select its centers of excellence?

The Medical Advisory Boards of the OIF and CBBF award center grants based on a competitive process. The participating Hospitals/Centers are listed above in ANSWER #1.

Any Hospital wishing to become a center would apply for grant money to The OIF and CBBF Medical Advisory Boards where their application is graded. At this time we are pretty well covered and we would be stretched to provide grant assistance to other potential centers. Our MAB (Medical Advisory Boards) also audit the Centers for compliance and continuing funding.

How has the LCRC been funded to date?

The CBBF provided $300,000 in 2008 to set up the Centers. After that we                   provide half the funds for the operating budgets of all the centers. We will be applying for funding from The NIH (National Institute of Health) to take this over after 2014.

What gets done at the LCRC sites?

Research as well as Clinical Studies and Treatments are done from these centers. Primarily, the research is clinically based. The research funded by the LCRC’s is generally around best treatments and prognosis based on “typing” which comes from skin biopsies of the patients. These biopsies allow are scientists to categorize (TYPE) the OI and by checking with these patients over time be able to predict the natural progression or outcomes the patients will have in the future. By knowing these things in advance patients and their families can better prepare themselves to deal with issues that are likely to occur.