Other Blood Cancer - Information Services Division

Other Blood Cancer

Data Definitions for the National Minimum Core Data Set

Definitions developed by ISD Scotland in Collaboration with the Regional Cancer Networks

Version 1.4: October 2014 (Removal of references to urological cancer sites which already have their own Cancer QPI datasets

+ Changes as a result of ecase development + WHO Classification 4th edition added 1st January

2011)

The National Clinical Data Set Development Programme (NCDDP) is part of national eHealth Strategy and aims to standardise data items across NHSScotland, where it is feasible. Work is ongoing looking at items that are generic to all settings e.g. demographics, and cancer generic and site specific areas. () Items that are being agreed or are in development as part of the programme are highlighted in the document.

National Data Definitions for National Minimum Core Data Set for Haematological Malignancies Developed by ISD Scotland in conjunction with the Regional Cancer Networks

CONTENTS PREFACE ...........................................................................................................i CRITERIA FOR INCLUSION OF PATIENTS IN AUDIT ..................................... ii IDENTIFICATION OF PATIENTS FOR AUDIT...................................................ii DATABASE SPECIFICATION ? Chronic Myeloid Leukaemia (CML) ................. iii DATABASE SPECIFICATION ? Plasma Cell Dyscrasias (PCD) ...................... vii DATABASE SPECIFICATION ? Lymphoproliferative Disorder (LPD).................x DATABASE SPECIFICATION ? Myelodysplastic Syndrome (MDS) ................ xiii

CONTENTS OF INDIVIDUAL DATASETS............................................................. xvi National Haematological Audit Data Items ...................................................... xvi Lymphoma.......................................................... Error! Bookmark not defined. Acute Leukaemia (AL) ........................................ Error! Bookmark not defined. Chronic Myeloid Leukaemia (CML).................................................................. xvi Plasma Cell Dyscrasias (PCD) .......................................................................xviii Lymphoproliferative Disorder (LPD).................................................................. xx Myelodysplastic Syndrome (MDS) .................................................................. xxii

Section 1: DATA DEFINITIONS FOR SHARED DATA ITEMS ............................xxvi Relevant Data Items ...................................................................................... xxvi

Patient Identifiers ................................................................................................ 1 Naming standards ............................................................................................. 1 Structured Name ............................................................................................... 1 Person Family Name ......................................................................................... 2 Person Given Name .......................................................................................... 3 Patient Address at Diagnosis {Cancer} .............................................................. 4 Patient Postcode at Diagnosis {Cancer} ............................................................ 5 Person Birth Date .............................................................................................. 6 Person Sex at Birth............................................................................................ 8 Location of Diagnosis {Cancer} ......................................................................... 9 Health Record Identifier ................................................................................... 10 CHI Number .................................................................................................... 11 Consultant in Charge....................................................................................... 12 Registered GP Practice Code.......................................................................... 13

HOSPITAL CLINICIANS AND REFERRAL DETAILS......................................... 14 Date of Cancer Referral................................................................................... 14 Date Referral Received ................................................................................... 15 Source of Cancer Referral............................................................................... 16 Urgency of Cancer Referral ............................................................................. 18 Clinician 1-4..................................................................................................... 19 Specialty of Clinician 1-4 ................................................................................. 20 Date of First Seeing Clinician 1-4 .................................................................... 22

Historical Data ................................................................................................... 23 Previous or Concurrent Malignant Disease...................................................... 23 Family History of Cancer ................................................................................. 24 Prior Exposure to Chemotherapy or Radiotherapy .......................................... 25

INVESTIGATIONS/DIAGNOSIS ......................................................................... 26 Cancer Registration Incidence Date {Cancer} ................................................. 26 WHO/ ECOG Performance Status .................................................................. 27 Haemoglobin ................................................................................................... 28 WBC Total....................................................................................................... 29 WBC Differential ? Neutrophils........................................................................ 30 WBC Differential ? Lymphocytes ..................................................................... 31 WBC Differential ? Promyelocytes................................................................... 32 WBC Differential ? Eosinophils........................................................................ 33

National Data Definitions for National Minimum Core Data Set for Haematological Malignancies Developed by ISD Scotland in conjunction with the Regional Cancer Networks

WBC Differential ? Basophils .......................................................................... 34 WBC Differential ? Blasts ................................................................................ 35 Platelets .......................................................................................................... 36 Bone Marrow Aspirate ..................................................................................... 37 Bone Marrow ? % Blasts ................................................................................. 38 Bone Marrow Trephine .................................................................................... 39 Serum LDH...................................................................................................... 40 B2 Microglobulin Level at Diagnosis ................................................................. 41 Albumin at Diagnosis ....................................................................................... 42 Serum Paraprotein .......................................................................................... 43 Serum Paraprotein Type ................................................................................. 44 Serum Paraprotein Quantification.................................................................... 45 Bence-Jones Protein ....................................................................................... 46 Free Light Chains Ratio (FLC) ......................................................................... 47 Cytogenetic Analysis Performed...................................................................... 48 Date of Cytogenetic Test ................................................................................. 49 Immunophenotyping Performed ...................................................................... 50 FISH Analysis Performed ................................................................................ 51 Date of FISH Test............................................................................................ 52 Molecular Analysis (PCR) Performed .............................................................. 53 Date Molecular Analysis Performed................................................................. 54 Splenomegaly.................................................................................................. 55 Palpable Spleen Size....................................................................................... 56 Type of Specimen(s) ....................................................................................... 57 Site of Specimen ............................................................................................. 58 Histo/ Cytopathology Report Number .............................................................. 61 Histo/ Cytopathology Investigation Report Date .............................................. 62 Date Histo/ Cytopathological Specimen Taken ................................................ 63 Location Code (Pathology) .............................................................................. 64 Most Valid Basis of Diagnosis {Cancer}........................................................... 66 Site of Origin of Primary Tumour {Cancer} ...................................................... 67 WHO Classification (4th Edition) ...................................................................... 68 Discussed by Care Team ................................................................................ 71 Date discussed by Care team {Cancer} ........................................................... 72 Seen by Clinical Nurse Specialist {Cancer} ..................................................... 73 Date First Seen by Clinical Nurse Specialist {Cancer} ..................................... 74 Reason Not Seen by Clinical Nurse Specialist {Cancer} .................................. 75 Seen by Specialist Palliative Care {Cancer}..................................................... 76 Date First Seen by Specialist Palliative Care {Cancer} .................................... 77 Reason Not Seen by Specialist Palliative Care {Cancer} ................................. 78 Type of Planned Therapy ................................................................................ 79 Type of First Cancer Treatment....................................................................... 81 Date of First Cancer Treatment ....................................................................... 82 Reason(s) for Delays in Starting First Cancer Treatment ................................ 83 Participant in Clinical Trial ............................................................................... 84 Clinical Trial Formal Entry Date ....................................................................... 85 Person Death Date .......................................................................................... 86 Underlying Cause of Death.............................................................................. 87

Section 2: SITE SPECIFIC DATA ITEMS .............................................................. 88

2.1 CHRONIC MYELOID LEUKAEMIA (CML) (Site Specific Definitions) ....... 88 Diagnosis {CML}.............................................................................................. 88 Disease Phase at Diagnosis {CML} ................................................................. 89

National Data Definitions for National Minimum Core Data Set for Haematological Malignancies Developed by ISD Scotland in conjunction with the Regional Cancer Networks

Leucapheresis Performed {CML}..................................................................... 90 Date of Diagnosis {CML} ................................................................................. 91 WBC Differential ? Myelocytes {CML} ............................................................. 92 WBC Differential ? Monocytes {CML} .............................................................. 93 Euro Risk Group {CML} ................................................................................... 94 Cytogenetic Analysis Result {CML} ................................................................. 95 Number of Metaphases {CML} ........................................................................ 96 Number of Metaphases Ph Positive {CML} ...................................................... 97 Number of Metaphases Ph Negative {CML} .................................................... 98 Percentage Metaphases Ph Positive {CML} .................................................... 99 Additional Cytogenetic Abnormalities {CML}.................................................. 100 FISH Cell Type {CML} ................................................................................... 101 Number of Cells (FISH) {CML} ...................................................................... 102 Number of Cells BCR-ABL Positive (FISH) {CML} ......................................... 103 Number of Cells BCR-ABL Negative (FISH) {CML} ....................................... 104 Percentage Cells BCR-ABL Positive (FISH) {CML} ....................................... 105 9q Deletion Status (FISH) {CML} ................................................................... 106 Molecular Analysis (PCR) Result {CML} ........................................................ 107 BCR-ABL Transcript Type (Molecular) {CML}................................................ 108 Percentage Ratio BCR-ABL/ABL (Molecular) {CML} ..................................... 109 Imatinib Dose {CML}...................................................................................... 110 Clinical Trial Name {CML}.............................................................................. 111 Cause of Death {CML}................................................................................... 112 2.2 PLASMA CELL DYSCRASIAS (PCD) (Site Specific Definitions)............ 113 Bone Marrow Aspirate ? % Plasma cells {PCD} ............................................ 113 Bone Marrow Trephine ? % Plasmacytosis {PCD}......................................... 114 Date of Diagnosis {PCD} ............................................................................... 115 Solitary Plasmacytoma {PCD} ....................................................................... 116 Serum Creatine at Diagnosis {PCD} .............................................................. 117 Serum Calcium at Diagnosis {PCD}............................................................... 118 FISH Analysis Result {PCD} .......................................................................... 119 Skeletal Survey {PCD}................................................................................... 120 Clinical Trial Name {PCD}.............................................................................. 121 2.3 LYMPHOPROLIFERATIVE DISORDER (LPD) (Site Specific Definitions) .......................................................................................................................... 122 WBC Differential ? Prolymphocytes {LPD} .................................................... 122 WBC Differential ? Reticulocyte {LPD} .......................................................... 123 Bone Marrow ? % Lymphocytes {LPD} .......................................................... 124 Bone Marrow Trephine ? % Lymphoid Cells {LPD}........................................ 125 Bone Marrow Trephine ? Pattern of Involvement {LPD} ................................ 126 Molecular Analysis (PCR) Result {LPD}......................................................... 127 FISH Analysis Result {LPD}........................................................................... 128 Date of Diagnosis {LPD} ................................................................................ 129 Binet Stage {LPD} ......................................................................................... 130 Clinical Trial Name {LPD} .............................................................................. 131 2.4 MYELODYSPLASTIC SYNDROME (MDS) (Site Specific Definitions) .... 132 WBC Differential ? Monocytes {MDS}............................................................ 132 Bone Marrow ? % Ringed Sideroblasts {MDS} .............................................. 133 Bone Marrow Trephine Confirms Diagnosis {MDS} ....................................... 134 Bone Marrow Trephine ? % Cellularity {MDS} ............................................... 135 Serum B12 {MDS} ......................................................................................... 136 Serum Folate at Diagnosis {MDS} ................................................................. 137 Serum Ferritin at Diagnosis {MDS} ................................................................ 138 Cytogenetic Complex Classification {MDS} ................................................... 139

National Data Definitions for National Minimum Core Data Set for Haematological Malignancies Developed by ISD Scotland in conjunction with the Regional Cancer Networks

Date of Diagnosis {MDS} ............................................................................... 140 IPSS Score and Risk Groups {MDS} ............................................................. 141 Sanz Score and Risk Groups {MDS} ............................................................. 142 Clinical Trial Name {MDS} ............................................................................. 143 Appendix 1: Guidelines for Registration of Lympho-haematopoietic Neoplasms including Transformations. ............................................................ 144

National Data Definitions for National Minimum Core Data Set for Haematological Malignancies Developed by ISD Scotland in conjunction with the Regional Cancer Networks

 ................
................

In order to avoid copyright disputes, this page is only a partial summary.

Google Online Preview   Download