Reporting of Transplant Outcomes

Expected To Begin This Month

Reporting of transplant outcomes for the C. W. Bill Young Cell Transplantation Program is expected to begin this month for all related and unrelated allogeneic blood, marrow and cord blood transplants in the United States.  The exact date depends on many factors, including approval of the data collection forms by the U.S. Office of Management and Budget (OMB), and completion of electronic systems testing.

“Transplant centers will be informed by the Center for International Blood and Marrow Transplant Research when the forms and systems are ready for data collection,” said Dr. J. Douglas Rizzo, CIBMTR Associate Scientific Director.  “We plan to give transplant centers as much lead time as possible.”

Launch packets were distributed to US transplant centers on June 11.  Included was information on how to use the new data collection instruments and systems.  Draft forms and FormsNet 2.0 training session dates were provided. 

CIBMTR began training transplant center staff and research professionals on the new forms in late June.  FormsNet 2.0 training CDs will be distributed to centers on a staggered schedule, with mailings to begin this month.  “We’ll continue to work closely with all centers to ensure a smooth transition to the new data collection process,” Dr. Rizzo said.

Legislative Requirement

Legislation enacted in 2005 requires the submission of treatment outcomes data to a Stem Cell Therapeutic Outcomes Database (SCTOD).  The CIBMTR was awarded a federal contract to create and maintain the database.  CIBMTR data collection forms and electronic system have been revised to accommodate the federal data requirements.  

In addition to preparing for the data collection launch, the CIBMTR has been assisting the National Marrow Donor Program (NMDP) with the development of a Web site for the C.W. Bill Young Cell Transplantation Program.  This site is being created to support public communication and education about bone marrow and cord blood donation and transplantation. 

The NMDP is leading development of the new site in its role as contractor for the program’s Office of Patient Advocacy/Single Point of Access (OPA/SPA).  The site will include content developed under the contracts for the Bone Marrow Coordinating Center (BMCC), the Cord Blood Coordinator Center (CBCC), and the SCTOD.  The Web site is also expected to be ready for introduction this month.

Web Site Tools

A data plan for the Web site has been created by CIBMTR staff members Dr. John Klein, Dr. Mary Eapen and Kathy Sobocinski, and approved by the CIBMTR Advisory Committee.  The site, which goes online this summer with a .gov suffix, will include three query tools:

·     National Survival Outcomes by Disease (100 day, 1 year, and 3 year)

·     National Transplant Data by Disease (demographic data)

·     National Transplant Data by center (demographic data)

These tools will allow site visitors to enter multiple patient or disease characteristics to customize queries regarding survival outcomes (e.g., survival for 55 year old man with ALL, ph+ disease, undergoing HLA-identical sibling transplantation), and view demographic data regarding diseases and transplant centers. Members of the CIBMTR Consumer Advocacy Committee participated in the evaluation and development of the query tools. 

An announcement will be made once the public Web site is operational.