Becoming a BBDC site
The BBDC welcomes other sites with expertise in brittle bone diseases to join our consortium. At a minimum, sites are required to fully participate in our longitudinal study of brittle bone diseases and would agree to abide by our research requirements and compliance goals for the study. At present, the BBDC does not have funding to add new sites and so new sites would need to identify funding to support the research locally. Those interested in becoming a BBDC site may email the Project Manager with your initial request and will then receive a brief, two page application to complete. The BBDC Executive Committee will consider these requesst and will present your request to the entire BBDC Steering Committee for review.
RDCRN Consortium Sites will be considered part of the RDCRN and Consortium. Consortium Sites will be expected to recruit patients as well as participate in other RDCRN and Consortium activities, including participating in network meetings and complying with the policies and procedures of the RDCRN and Consortium.
Recruiting sites will not be considered part of the Consortium or part of the Rare Diseases Clinical Research Network (RDCRN). They will not attend network meetings or vote on Consortium matters. Their role will be limited to the protocol(s) defined below and requirements for appropriately recruiting and enrolling participants on the specified protocol(s).
Ancillary study development
If you are an investigator interested in partnering with the BBD, we ask that you initially contact the Project Manager with a brief summary (one paragraph) of your study proposal. If the proposal is aligned with the mission of the BBDC, you will be asked to provide a more detailed protocol summary to the entire BBDC Steering Committee.
Data Access Request
If you are an investigator interested in accessing the Consortium’s data set, review our policy and email the Project Manager, with your request.