Sharing Progress Report Knowledge. JANUARY– DECEMBER 2014 Sharing Hope. CIBMTR® (Center for International Blood and Marrow Transplant Research®) is a research collaboration between the National Marrow Donor Program®/Be The Match® and Medical College of Wisconsin Progress January – December Report 2014 Milwaukee Campus Minneapolis Campus Medical College of Wisconsin National Marrow Donor Program 9200 W Wisconsin Ave, Suite C5500 3001 Broadway St NE, Suite 100 Milwaukee, WI 53226 USA Minneapolis, MN 55413-1753 USA (414) 805-0700 (612) 884-8600 www.cibmtr.org Center for International Blood and Marrow Transplant Research Progress Report: January – December 2014 TABLE OF CONTENTS 1.0 OVERVIEW OF THE CIBMTR ............................................................................................................................... 1 1.1 Value of the CIBMTR as a Resource .............................................................................................................. 1 1.2 Goals .............................................................................................................................................................. 2 1.3 Research Strategy .......................................................................................................................................... 2 1.4 Organizational and Research Program Structure .......................................................................................... 3 1.5 Committee Structure ..................................................................................................................................... 3 1.5.1 Assembly ................................................................................................................................................ 3 1.5.2 Advisory Committee ............................................................................................................................... 5 1.5.3 Nominating Committee .......................................................................................................................... 6 1.5.4 Scientific Working Committees .............................................................................................................. 6 1.5.5 Steering Committees .............................................................................................................................. 8 1.6 Training .......................................................................................................................................................... 8 1.6.1 Internal Training Initiatives .................................................................................................................... 8 1.6.2 External Training Initiatives .................................................................................................................. 10 1.6.3 Staff Continuing Education ................................................................................................................... 11 2.0 RESOURCE DEVELOPMENT PLAN ACCOMPLISHMENTS .................................................................................. 12 2.1 Quality and Scope of the Research Database ............................................................................................. 12 2.1.1 Stem Cell Therapeutic Outcomes Database (SCTOD) .......................................................................... 12 2.1.2 Research Data Life Cycle ...................................................................................................................... 13 2.1.3 FormsNet .............................................................................................................................................. 14 2.1.4 Research Database ............................................................................................................................... 16 2.1.5 Data Quality .......................................................................................................................................... 17 2.1.6 Transplant Center Visits ....................................................................................................................... 19 2.1.7 Data and Information for Statistical Center Operations (DISCO) ......................................................... 19 2.1.8 Human Subjects / HIPAA Compliance .................................................................................................. 19 2.1.9 Information Security and Data Privacy ................................................................................................ 19 2.2 Technology Solutions for Sharing Data ....................................................................................................... 20 2.2.1 Data Sharing Initiative .......................................................................................................................... 20 2.2.2 Applications for Sharing Data ............................................................................................................... 20 3.0 SCIENTIFIC RESOURCE UTILIZATION PLAN ACCOMPLISHMENTS .................................................................... 23 3.1 Processes for Proposed Studies .................................................................................................................. 23 3.2 Moving a Study Proposal to Publication ..................................................................................................... 24 3.3 Support of Clinical Trials .............................................................................................................................. 24 3.3.1 BMT CTN ............................................................................................................................................... 25 3.3.2 RCI BMT ................................................................................................................................................ 26 CIBMTR Progress Report 2014 TABLE OF CONTENTS 3.4 Long Term Follow-Up of Patients in Clinical Trials ...................................................................................... 26 3.5 Use of Immunologic Data from the Research Sample Repository .............................................................. 31 3.6 Observational Studies ................................................................................................................................. 32 3.6.1 Non-Transplant Therapy Research Initiatives ...................................................................................... 33 3.7 Biostatistical Approaches ............................................................................................................................ 34 3.8 Health Services Research in HCT ................................................................................................................. 35 4.0 DISSEMINATION OF RESULTS .......................................................................................................................... 37 4.1 BMT Tandem Meetings ............................................................................................................................... 37 4.2 Presentations .............................................................................................................................................. 37 4.3 Standard Reports ......................................................................................................................................... 37 4.3.1 Report of Survival Statistics for BMT .................................................................................................... 37 4.3.2 Transplant Data by US Center Report .................................................................................................. 38 4.3.3 Annual Report on Transplant Center Survival Rates ............................................................................ 38 4.3.4 Summary Slides .................................................................................................................................... 38 4.3.5 Summary of Accomplishments ............................................................................................................ 38 4.3.6 Study Summaries for Patients .............................................................................................................. 38 4.3.7 Newsletters .......................................................................................................................................... 39 5.0 RESOURCE SHARING ........................................................................................................................................ 40 5.1 Publications ................................................................................................................................................. 40 5.2 Websites ...................................................................................................................................................... 40 5.2.1 CIBMTR Public Internet Presence ........................................................................................................ 40 5.2.2 NMDP / Be The Match Internet Presence ............................................................................................ 41 5.2.3 HRSA Blood Cell Transplant Website ................................................................................................... 42 5.3 Data Resources 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