2011 Progress Report

Progress January – December Report 2011 Milwaukee Campus Minneapolis Campus Medical College of Wisconsin National Marrow Donor Program 9200 W Wisconsin Ave, Suite C5500 3001 Broadway St NE, Suite 110 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 2011 Table of Contents 1.0 OVERVIEW OF CIBMTR ......................................................................................................................................... 1 1.1 BACKGROUND .........................................................................................................................................1 1.2 ORGANIZATIONAL STRUCTURE ...............................................................................................................1 1.3 COMMITTEE STRUCTURE ........................................................................................................................3 1.4 CIBMTR STATISTICAL CENTER PERSONNEL .............................................................................................7 1.5 STAFF TRAINING AND ORGANIZATIONAL DEVELOPMENT ................................................................... 13 2.0 CIBMTR RESEARCH ACTIVITIES ........................................................................................................................... 16 2.1 OBSERVATIONAL RESEARCH ................................................................................................................. 16 2.2 CIBMTR STUDIES ................................................................................................................................... 17 2.3 CLINICAL TRIALS SUPPORT AND PROSPECTIVE RESEARCH................................................................... 17 2.4 IMMUNOBIOLOGY RESEARCH ACTIVITIES ............................................................................................ 19 2.5 HEALTH SERVICES RESEARCH (HSR) PROGRAM ................................................................................... 20 2.6 STEM CELL THERAPEUTIC OUTCOMES DATABASE (SCTOD) ................................................................. 21 2.7 CELLULAR THERAPY FOR REGENERATIVE MEDICINE (CTRM) ............................................................... 23 2.8 HCT FOR MYELODYSPLASTIC SYNDROME (MDS) FOR MEDICARE RECIPIENTS .................................... 23 2.9 DISEASE-BASED REGISTRY FOR SEVERE APLASTIC ANEMIA (SAA) ....................................................... 24 3.0 STATISTICAL RESOURCES .................................................................................................................................... 25 4.0 DATA COLLECTION, ACCRUAL, AND MANAGEMENT.......................................................................................... 26 4.1 TRANSPLANT DATA COLLECTION ......................................................................................................... 26 4.2 LEVELS OF DATA COLLECTION .............................................................................................................. 28 4.3 DATA MANAGEMENT ........................................................................................................................... 29 4.4 DATA QUALITY ...................................................................................................................................... 30 5.0 HUMAN SUBJECTS/HIPAA COMPLIANCE ............................................................................................................ 33 5.1 INSTITUTIONAL REVIEW BOARD APPROVALS ...................................................................................... 33 5.2 PRIVACY RULE – HIPAA ......................................................................................................................... 33 5.3 GENDER AND MINORITY INCLUSION .................................................................................................... 34 5.4 INCLUSION OF CHILDREN ..................................................................................................................... 34 6.0 CIBMTR INFORMATION TECHNOLOGY SERVICES ............................................................................................... 35 6.1 FORMSNET™2.0 .................................................................................................................................... 36 6.2 FORMSNETTM3.0 ................................................................................................................................... 36 6.3 A GROWABLE NETWORK INFORMATION SYSTEM (AGNIS) .................................................................. 37 6.4 RESEARCH DATABASE ........................................................................................................................... 38 6.5 WEB PRESENCE ..................................................................................................................................... 39 6.6 DELIVERING MEANINGFUL DATA ......................................................................................................... 41 6.7 IT SECURITY ........................................................................................................................................... 42 7.0 MEETINGS & PRESENTATIONS ............................................................................................................................ 43 7.1 MEETINGS ............................................................................................................................................. 43 7.2 NEWSLETTERS ....................................................................................................................................... 44 8.0 SIGNIFICANCE ..................................................................................................................................................... 45 9.0 WORKING COMMITTEE STUDIES ........................................................................................................................ 47 9.1 ACUTE LEUKEMIA WORKING COMMITTEE ........................................................................................... 47 9.2 AUTOIMMUNE DISEASES WORKING COMMITTEE ............................................................................... 55 9.3 CELLULAR THERAPIES WORKING COMMITTEE ..................................................................................... 57 9.4 CHRONIC LEUKEMIA WORKING COMMITTEE ...................................................................................... 59 9.5 DONOR HEALTH AND SAFETY WORKING COMMITTEE ........................................................................ 63 9.6 GRAFT SOURCES & MANIPULATION WORKING COMMITTEE .............................................................. 65 9.7 GRAFT-VERSUS-HOST DISEASE WORKING COMMITTEE ...................................................................... 73 9.8 HEALTH POLICY & PSYCHOSOCIAL ISSUES WORKING COMMITTEE ..................................................... 81 9.9 IMMUNE DEFICIENCIES & INBORN ERRORS OF METABOLISM WORKING COMMITTEE ..................... 87 9.10 IMMUNOBIOLOGY WORKING COMMITTEE ....................................................................................... 91 9.11 INFECTION & IMMUNE RECONSTITUTION WORKING COMMITTEE ................................................ 105 9.12 INTERNATIONAL STUDIES WORKING COMMITTEE .......................................................................... 109 9.13 LATE EFFECTS & QUALITY OF LIFE WORKING COMMITTEE .............................................................. 113 9.14 LYMPHOMA WORKING COMMITTEE ............................................................................................... 117 9.15 NON-MALIGNANT MARROW DISORDERS WORKING COMMITTEE ................................................. 125 9.16 PEDIATRIC CANCER WORKING COMMITTEE .................................................................................... 129 9.17 PLASMA CELL DISORDERS WORKING COMMITTEE .......................................................................... 133 9.18 REGIMEN-RELATED TOXICITY & SUPPORTIVE CARE WORKING COMMITTEE .................................. 141 9.19 SOLID TUMORS WORKING COMMITTEE .......................................................................................... 149 APPENDIX A1: CIBMTR INTERNATIONAL CENTERS ................................................................................................ 153 APPENDIX A2: CIBMTR U.S. CENTERS ..................................................................................................................... 163 APPENDIX B1: CIBMTR STATISTICAL CENTER ORGANIZATIONAL STRUCTURE – MILWAUKEE CAMPUS .............. 172 APPENDIX B2: CIBMTR STATISTICAL CENTER ORGANIZATIONAL STRUCTURE – MINNEAPOLIS CAMPUS ............ 173 APPENDIX C: WORKING COMMITTEE LEADERSHIP ................................................................................................ 174 APPENDIX D1: ADVISORY COMMITTEE .................................................................................................................. 179 APPENDIX D2: EXECUTIVE COMMITTEE ................................................................................................................. 181 APPENDIX D3: CONSUMER ADVOCACY COMMITTEE ............................................................................................. 182 APPENDIX E: NOMINATING COMMITTEE 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