The CBMTG Registry annual report will be available later in 2014. Registry data access is available for several partners. Data is collected at the time of transplant, and at regular intervals after transplant. The data collected at the time of transplant includes detailed information about the patient (age, other medical problems, overall health), the underlying disease that the transplant was performed for, and details on the transplant itself (including information on the donor and medications used in the transplant process). The follow up forms include information on the current clinical status of the patient and common or specific complications that developed after transplant.
CBMTG Registry data is available for research projects, reviewed by the Registry Steering Committee. Any clinical researchers from centres participating in the registry are invited to use the registry data for research studies. Interested researchers are welcome to submit a proposal. These projects are reviewed annually at the CBMTG Annual Meeting, and discussed by the committee. Projects are reviewed by the Canadian BMT research community and prioritized according to scientific merit, project need, and feasibility. For more information please contact Dr. Kristjan Paulson (firstname.lastname@example.org).
In addition, CBMTG data is available to assist in the management of patients with rare diseases or disorders. We will attempt to retrieve this data within 1 week of queries. However, it should be remembered that the CIBMTR also offers this service, and has a larger patient pool to access. If you are interested in this service, please contact Erin Richardson (email@example.com).
Finally, CBMTG Registry data is available for industry partners. Data is available in aggregate form (not patient-level). For information on how to become a sponsor, please contact Ana Torres. If you are already a sponsor, and are interested in developing a registry query, please contact Dr. Kristjan Paulson (firstname.lastname@example.org).