Over the years, the CBBF has broadened its grant mechanism to include more clinical concerns and since 2006 has worked with the OI Foundation on the Linked Clinical Research Center (LCRC) program. The LCRC program began as a multi-year, multi-center effort to improve care for people with all types of OI across the entire lifespan. From 2006-2014 the LCRC program focused on shaping the future of OI care by:
- Addressing barriers to research for a rare disorder and speeding up the pace of research focused on clinical care.
- Addressing the gap in information about care for teens and adults who have OI.
- Creating evidence-based guidelines for pediatric and adult care for all types of OI.
What began as the LCRC is now the BBD Consortium
The CBBF funded the efforts of the LCRC from 2006 – 2014 while the program was getting off the ground. For the last several years we (along with the OIF and members of the LCRC) applied for federal funding to take over and expand the scope of the LCRC. We’re very proud and excited to say that we are part of a team that was awarded $6.25M from the NIH to lead the BBD Consortium to further the research and treatment of OI.
For more information on the BBD please visit this site and contact:
A brief history of the LCRC
The LCRC program began as a network of medical centers that have expertise caring for children and adults who have OI as well as experience in conducting high quality medical research. As a group, the linked centers pursue research into OI, and refer children and adults who have OI to care health care providers. Data collected at each center visit is maintained in a secure, central data-base and thoroughly analyzed. The privacy of each participant is carefully protected. The Centers are capable of tracking how OI changes across a lifetime, what complications are common, and which treatments are beneficial.
The LCRC program is important because the success of research studies into a rare disorder like OI depends on solving two fundamental problems: getting enough people to participate so the observations are meaningful and gathering data from different medical centers in exactly the same manner. Solving these problems is the heart of the LCRC program.
Linked Clinical Centers are up and running in the following cities:
- Los Angeles [UCLA/Shriners Hospital]
- Portland [Oregon Health Sciences University (OHSU)/Shriners Hospital]
- Chicago (Marquette University/Shriners Hospital),
- Montreal (Shriners Hospital)
- New York [Hospital for Special Surgery (HSS)]
- Washington DC (Children’s National Medical Center)
- Baltimore [Kennedy Krieger Institute (KKI)]
- Houston [Baylor College of Medicine (BCM)]