Reporting Data Item

Definition

Format

Code List (Code)

Code List (Text)

Status

COSD

Core - Diagnosis. Record for All Haematopoietic and Lymphoid Malignancies

Morphology - WHO Classification of Tumours of Haematopoietic and Lymphoid tissues 2017

To use the gold standard classification to record the morphological type of haematopoietic/lymphoid tissue - this is the most reliable method of recording the type of tumour which integrates the diagnosis - to be used as the lead code and translate to other coding systems as required

an6

N/A

N/A

M

N/A

Core - Patient. Record for All Haematopoietic and Lymphoid Malignancies

Bone Marrow Transplant (BMT) Serology or Viral Screen

Has the patient undergone a BMT Serology or Viral Screen

Note: Serology or Viral Screen tests include - HepB surface antigen (HBsAg), Hep C antibody (anti-HCV), HIV AG/Ab, CMV IgG, Hep B total core antibody (Anti-HBc), Toxoplasma IgG, HTLV 1 and 2, Syphilis total antibody, EBV nuclear antigen IgG

Code List

Y

Yes

M

N/A

N

No

9

Not recorded

Bone Marrow Transplant (BMT) Serology or Viral Screen Date

Date the patient underwent a BMT Serology or Viral Screen

Note: This data item is only required where Bone Marrow Transplant (BMT) Serology or Viral Screen is recorded as Yes

ccyymmdd

N/A

N/A

R

N/A

Bone Marrow Transplant (BMT) Serology or Viral Screen Results

Record the results for the BMT Serology or Viral Screen performed

Note: This data item is only required where Bone Marrow Transplant (BMT) Serology or Viral Screen is recorded as Yes

Code List

1

Positive

R

N/A

2

Negative

Clinical Comments on Positive BMT Serology or Viral Screen Results

Record in free text any clinical comments on positive results of the BMT Serology or Viral Screen if required

Note: This data item is only required where Bone Marrow Transplant (BMT) Serology or Viral Screen Results is recorded as Positive

max an50

N/A

N/A

R

N/A

Patient Eligibility Status for Stem Cell Transplantation

An indication of whether a patient is eligible for stem cell transplantation as part of the pathway

Note: If Eligible is recorded for this data item, the section Stem Cell Transplantation should also be completed

Code List

1

Eligible

R

N/A

2

Not Eligible

Tissue Typing Sent for Analysis

Has tissue been sent for tissue typing

Code List

Y

Yes

R

N/A

N

No

Date Tissue Sent

Record the date the tissue was sent for tissue typing/analysis

Note: Only required if Tissue Typing Sent for Analysis is recorded as Yes

ccyymmdd

N/A

N/A

R

N/A

 Core. Record for all Haematopoietic and Lymphoid Malignancy Data Items

Transfusion Dependent

Does the patient require regular blood transfusions

Note: Required to derive the DIPSS Plus prognostic score

Code List

Y

Yes

M

N/A

N

No

Blood Haemoglobin Concentration (Grams per Litre)
(at diagnosis)

Blood haemoglobin concentration g/l. 

Note: Required to derive the:
DIPSS & DIPSS Plus prognostic score
IPSS & IPSS-R Index prognostic score
RAI stage
Binet stage
Hasenclever Index
FLIPI-2 Index

max n3

N/A

N/A

M

N/A

White Blood Cell Count (Highest Pre Treatment)

Highest white blood cell count pre-treatment (x10⁹ per litre).  

Note: Required to derive the:
DIPSS & DIPSS Plus prognostic score
RAI stage
MIPI Score
Hasenclever Index

max n3.max n1
Range 0.0 to 999.9

N/A

N/A

M

White Blood Cell Count (Highest Pre Treatment) (HA8150)

Platelet Count

Level of platelets in blood as n x10⁹ per litre, to be collected at diagnosis.   

Note: Required to derive the:
DIPSS Plus prognostic score
IPSS & IPSS-R Index prognostic score
RAI stage
Binet stage
Sokal Index

max n4
Range 0-5000

N/A

N/A

M

N/A

Neutrophil Count

Blood neutrophil count n/dl.     

Note: Required to derive the IPSS & IPSS-R Index prognostic score

max n3.max n1
Range 0.0 to 999.9

N/A

N/A

M

N/A

Bone Marrow Examination Performed

Has the patient had a bone marrow examination

Code List

Y

Yes

M

N/A

N

No

9

Not Known

Bone Marrow Involved

Is the patient’s bone marrow involved

Note: This data item is only required where Bone Marrow Examination Performed is recorded as Yes

Code List

Y

Yes

R

N/A

N

No

9

Not Known

Date Bone Marrow Examination undertaken

To record the date the bone marrow examination was done

Note: This data item is only required where Bone Marrow Examination Performed is recorded as Yes

ccyymmdd

N/A

N/A

R

N/A

Bone Marrow Examination Type

To record the type of Bone Marrow Examination undertaken

Note: This data item is only required where Bone Marrow Examination Performed is recorded as Yes

Code List

1

Trephine

R

N/A

2

Aspirate

Result of Bone Marrow Examination

The result of the bone marrow examination done

Note: This data item is only required where Bone Marrow Examination Performed is recorded as Yes

Code List

1

Positive

R

N/A

2

Negative

3

Equivocal

Transformation

Has the patient’s disease transformed

Code List

Y

Yes

M

N/A

N

No

9

Not recorded

Date of Transformation

Date the patient’s disease transformed

ccyymmdd

N/A

N/A

M

N/A

Lymphoma Data Items. Record in addition to the Core Haematopoietic and Lymphoid Data Items

Ann Arbor Stage

Staging based on location of detected disease

Note: Required to derive the:
Hasenclever Index
R-IPI Index
CNS-IPI Index
FLIPI-2 Index

Code List

1

I = One region of lymph nodes, or spleen or thymus or Waldeyer's ring enlarged

M

Ann Arbor Stage (HA8280)

2

II = 2 regions of lymph nodes enlarged on same side of diaphragm

3

III = lymph nodes enlarged on both sides of diaphragm

4

IV = disease outside lymph nodes e.g., liver, bone marrow

Ann Arbor Symptoms

Additional stage designation based on presence or absence of specific symptoms

Code List

A

No symptoms

M

Ann Arbor Symptoms (HA8290)

B

Presence of any of the following: unexplained persistent or recurrent fever (greater than 38°C/101.5°F), drenching night sweats, unexplained weight loss of 10% or more within the last 6 months

Ann Arbor Extranodality

Additional staging designation based on extranodal involvement

Note:
(i) For Primary Nodal Lymphoma: Code E if there is involvement of a single extranodal site by contiguous spread (ie directly adjoining) from the known nodal group.
(ii) For Primary Extranodal Lymphoma: Code E if there is a single extranodal lesion with or without lymphatic involvement in the draining area (e.g., a thyroid lymphoma with draining cervical lymph node involvement = IIE)
(iii) The designation of Stage 4 for nodal disease implies disseminated disease involving (distant) extranodal sites.  Multiple extranodal deposits should be considered Stage IV and E should not be used.  However, by convention, involvement of the bone marrow, liver, lung, pleura and CSF are always considered Stage 4 even if the disease is isolated to that organ.

Code List

E

E - Extranodal involvement

M

Ann Arbor Extranodality (HA8300)

0

No Extranodal involvement

Ann Arbor Bulk

Additional staging designation based on presence of bulky disease. 

Note: Code Bulky disease present if there is presence of 'bulky' disease, that is, a nodal mass whose greatest dimension is more than 10 cm in size, and/or a widening of the mediastinum (middle chest) by more than one-third

Code List

X

Bulky disease present

M

Ann Arbor Bulk (HA8310)

0

No bulky disease present

Ann Arbor Splenic Involvement

Additional staging designation based on splenomegaly or normal spleen size with confirmed disease involvement.  

Note: Record Spleen involvement or splenomegaly if either is true

Code List

S

Spleen involvement or splenomegaly

M

Ann Arbor Splenic Involvement (HA8680)

0

No spleen involvement or splenomegaly

Number of Abnormal Nodal Areas

Number of abnormal nodal areas detected clinically and radiologically

Note: Required to derive the FLIPI-2 Index

max n2

N/A

N/A

M

Number of Abnormal Nodal Areas (HA8320)

Number of Extranodal Sites Code

Number of sites with lymphoma outside lymph nodes (clinical assessment)

Note:
i. The Codes 3, 4 and 5 are not present in COSD but have been added here as a site-specific requirement. Also note that COSD defines Code 2 as More than 1.
ii. This data item is required to derive the:
R-IPI Index
CNS-IPI Index

Code List

0

0

M

Number of Extranodal Sites Code (HA8420)

1

1

2

2

3

3

4

4

5

5 and over

Primary Extranodal Site

Site of origin of lymphoma if believed to be outside lymph nodes as agreed by MDT based on clinical and radiological findings

Code List

01

Blood

M

Primary Extranodal Site (HA8330)

02

Bone

03

CNS

04

GIT

05

GU

06

Liver

07

Marrow

08

Muscle

09

Orbit

10

Pericardium

11

Pulmonary

12

Salivary gland

13

Skin

14

Thyroid

15

Other

Lactate Dehydrogenase Level (LDH)

Lactate Dehydrogenase level in serum measured pre-treatment.  Normally provided from Biochemistry laboratory before treatment.

Note: Required to derive the:
MIPI Score
IELSG Index
R-IPI Index
CNS-IPI Index
FLIPI-2 Index

Code List

1

Above normal

M

N/A

2

Not above normal

3

Test not done

Kidney/Adrenal Involvement

Has the patient got kidney and/or adrenal involvement

Note: Required to derive the CNS-IPI Index

Code List

Y

Yes

M

N/A

N

No

Biopsy

Has the patient had a biopsy performed

Code List

Y

Yes

R

N/A

N

No

9

Not Known

Date of Biopsy

To record the date the biopsy was taken

Note: Only required where Biopsy is recorded as Yes

ccyymmdd

N/A

N/A

R

N/A

Site of Biopsy

To record the body site from where the biopsy was taken

Note: Only required where Biopsy is recorded as Yes

Code List

01

Chest

R

N/A

02

Abdomen

03

Bone

04

Brain

05

Lymph Nodes

06

Pleura

07

Mediastinum

08

Liver

09

Pancreas

10

Spleen

11

Skin

97

Other

Result of Biopsy

The result of the biopsy that was taken

Note: Only required where Biopsy is recorded as Yes

Code List

P

Positive

R

N/A

N

Negative

E

Equivocal

All Wales Lymphoma Panel Review

Has the patient’s pathology been reviewed by the All Wales Lymphoma panel

Code List

Y

Yes

M

N/A

N

No

9

Not recorded

Date of Report Issued by Lymphoma Panel

Date the All Wales Lymphoma Panel issue the report following review of pathology

Note: Only required where All Wales Lymphoma Panel Review is recorded as Yes

ccyymmdd

N/A

N/A

R

N/A

Treatment Response

To indicate the patient’s response to treatment

Code List

01

CR - Complete Response 

 R

N/A

02

MRD+ - Minimal Residual Disease Positive

03

VGPR - Very Good Partial Response

04

GPR - Good Partial Response

05

SD - Stable Disease

06

PD - Progressive Disease

99

NE - Non Evaluable

00

Death

Non Hodgkin Lymphoma Data Item. Record in addition to the Core Haematopoietic and Lymphoid Data Items & Lymphoma Core Data Items

ALK Fusion Status for ALCL

The Anaplastic Lymphoma Kinase (ALK) protein is expressed in a subset of ALCL due to underlying gene fusion events.   Its presence or absence distinguishes prognostically important subsets of this diagnosis

an1

1

Positive

M

ALK Fusion Status for ALCL (CT6260)

2

Negative

3

Indeterminate/Test Failed

8

Not Applicable (Not Tested)

9

Not Known

Follicular Lymphoma Data Item. Record in addition to the Core Haematopoietic and Lymphoid Data Items & Lymphoma Core Data Items

FLIPI 2 Index Score

Follicular Lymphoma International Prognostic Index Score 2 (FLIPI 2)

Note: This is derived data item from age, Serum beta 2 microglobulin, bone marrow involvement, longest diameter of largest involved node and Haemoglobin. A score of 1 is given for each of the following scenarios:
Age>60 years
HB <120 g/l
>4 nodal areas
B2M above normal
Ann Arbor Stage III or IV

n1
Range 0-5

N/A

N/A

D

FLIPI 2 Index Score (HA8360)

Diffuse Large B Cell Lymphoma (DLBCL) Data Items. Record in addition to the Core Haematopoietic and Lymphoid Data Items & Lymphoma Core Data Items

(R)IPI Index for DLBCL Score

Revised International Prognostic Index Score

Note: This is derived data item from Age, performance status, LDH, extranodal sites, Ann Arbor Stage. A score of 1 is given for each of the following scenarios:
Age >60
Performance Status >2
LDH above Normal
>1 extranodal site
Ann Arbor Stage III or IV

n1
Range 0-5

N/A

N/A

D

(R)IPI Index for DLBCL Score (HA8450)

CNS-IPI

CNS International Prognostic index. This estimates the risk of CNS relapse/progression

Note: This is a derived data item from age at diagnosis, performance status, LDH, Extranodal sites, Stage, Ann Arbor Stage, Kidney and/or Adrenal involvement. The methodology for how the values are derived is located at https://qxmd.com/calculate/calculator_428/cns-international-prognostic-index-in-diffuse-large-b-cell-lymphoma-cns-ipi

Code List

1

Low Risk (0 or 1)

D

N/A

2

Intermediate Risk (2 or 3)

3

High Risk (4 or 5)

Germinal Centre

Is the gene present

Code List

Y

Yes

R

N/A

N

No

MYC Expressed

Is this gene present

Code List

Y

Yes

R

N/A

N

No

MYC Gene Mutated

Has this gene mutated

Code List

Y

Yes

R

N/A

N

No

BCL-2 Expressed

Is this gene present

Code List

Y

Yes

R

N/A

N

No

BCL-2 Mutated

Has this gene mutated

Code List

Y

Yes

R

N/A

N

No

Primary CNS Lymphoma Data Items. Record in addition to the Core Haematopoietic and Lymphoid Data Items & Lymphoma Core Data Items

IELSG Index

IELSG prognostic index score

Note: This is a derived data item from age at diagnosis, ECOG performance status, LDH, elevated cerebrospinal fluid protein, deep structures involved. The methodology for how the values are derived is located at
https://oncologypro.esmo.org/Oncology-in-Practice/Practice-Tools/International-Prognostic-Index-Tools-for-Lymphoma/Index-for-CNS-Lymphoma

Code List

1

Low Risk (0-1)

D

N/A

2

Intermediate Risk (2-3)

3

High Risk (4-5)

Hodgkin Lymphoma Data Items. Record in addition to the Core Haematopoietic and Lymphoid Data Items & Lymphoma Core Data Items

Hasenclever Index

Hasenclever Index

Note: This is a derived data item from age, gender, Hb, Albumin, white blood
count, Lymphocyte count, Ann Arbor stage and is only required for lymphomas with Ann Arbor Stage III or IV.  A score of 1 is given for each of the following scenarios:
Age >44
Male gender
Hb <105 g/L
Albumin <40 g/L
White blood count >14.9 x 10^9/L
Lymphocyte count <0.6 x 10^9/L (or Lymphocyte percentage of WBC <8%)
Ann Arbor Stage IV   

The methodology for how the values are derived is located at https://oncologypro.esmo.org/Oncology-in-Practice/Practice-Tools/Hasenclever-Index-for-Hodgkin-s-Disease

n1
Range 0-7

N/A

N/A

D

Hasenclever Index (HA8670)

Mantle Cell Lymphoma. Record in addition to the Core Haematopoietic and Lymphoid Data Items & Lymphoma Core Data Items
 

MIPI Score

Mantle Cell Lymphoma International Prognostic Index (MIPI).

Note: This is a derived data item from age (years), performance status, LDH, WCC, Ki-67(expressed as percentage). The methodology for the MIPI is (0.03535 x Age) + (0.6978 x (ECOG >1)) + (1.367 x log10 (LDH/ULN)) + (0.9393 x Log10 (white cell count))

Code List

1

Low Risk

D

N/A

2

Intermediate Risk

3

High Risk

Acute Myeloid Leukaemia (AML) Data Items. Record in addition to the Core Haematopoietic and Lymphoid Data Items & Lymphoma Core Data Items

Primary Induction Failure

Did the patient fail to achieve morphological remission after induction chemotherapy

Code List

Y

Yes

R

Primary Induction Failure (CT7110)

N

No

9

Not known

European Leukaemia NET (ELN) Genetic Risk (Acute Myeloid Leukaemia)

Cytogenetic and molecular analysis of bone marrow (preferably) or blood

Code List

F

Favourable

R

European Leukaemia NET (ELN) Genetic Risk (Acute Myeloid Leukaemia) (HA9200)

I

Intermediate

A

Adverse

N

No results

FAB Classification

FAB Classification of AML used during diagnosis of acute myeloid leukaemia

Code List

M0

Undifferentiated acute myeloblastic leukaemia

 R

FAB Classification (CT7160)

M1

Acute myeloblastic leukaemia with minimal maturation

M2

Acute myeloblastic leukaemia with maturation

M3

Acute promyelocytic leukaemia

M4

Acute myelomonocytic leukaemia

M4EOS

Acute myelomonocytic leukaemia with eosinophilia

M5

Acute monocytic leukaemia

M6

Acute erythroid leukaemia

M7

Acute megakaryocytic leukaemia

AML Risk Factors

Record if any of these risk factors are present in a patient at diagnosis

Code List

1

De novo

R

AML Risk Factors (CT7180)

2

High Risk MDS

3

Secondary AML

Cytogenetic Marker

Specify relevant cytogenetic marker
(this is related to morphology from WHO classification)
 

Code List

01

t(8;21)(q22;q22.1); RUNX1-RUNX1T1 (9896/3)

 R

N/A

02

inv(16)(p13.1q22) or t(16;16)(p13.1;q22); CBFB-MYH11(9871/3)

03

Acute promyelocytic leukaemia with PML-RARA (9866/3)

04

t(9;11)(p21 .3;q23.3); KMT2A-MLLT3 (9897/3)

05

t(6;9)(p23;q34.1); DEK-NUP214 (9865/3)

06

inv(3)(q21.3q26.2) or (t3;3)(q21.3;q26.2); GATA2, MECOM (9869/3)

07

t(1;22)(p13.3;q13.1); RBM15-MKL1 (9911/3)

08

AML with BCR-ABL1 (9912/3)

09

AML with mutated NPM1 (9877/3)

10

AML with biallelic mutation of CEBPA (9878/3)

11

AML with mutated RUNX1 (9879/3)

Cytogenetic Marker - Other

Specify the Other Cytogenetic Marker

Note: This is only required if the marker is not one of those listed in data item Cytogenetic Marker

max an50

N/A

N/A

R

N/A

Molecular Genetic Results - FLT-3 and ITD

Specify the molecular genetic results for FLT-3 and ITD

Code List

1

Positive

R

N/A

2

Negative

Molecular Genetic Results - NPM1

Specify the molecular genetic results for NPM1

Code List

1

Positive

R

N/A

2

Negative

Treatment Response

To indicate the patient’s response to treatment

Code List

01

CR - Complete Response 

R

N/A

02

MRD+ - Minimal Residual Disease Positive

03

VGPR - Very Good Partial Response

04

GPR - Good Partial Response

05

SD - Stable Disease

06

PD - Progressive Disease

99

NE - Non Evaluable

00

Death

Acute Lymphoblastic Leukaemia (ALL) Data Items. Record in addition to the Core Haematopoietic and Lymphoid Data Items & Lymphoma Core Data Items

Primary Induction Failure

Did the patient fail to achieve morphological remission after induction chemotherapy

Code List

Y

Yes

R

Primary Induction Failure (CT7110)

N

No

9

Not known

Extramedullary Disease

Site/s of disease identified outside bone marrow, including presence of blasts within CSF (more than one option can be recorded)

Code List

1

CNS1 (without blasts)

M

Extramedullary Disease (HA8270)

2

CNS2 (<5WBC in the CSF with blasts)

3

CNS3 (>WBC in the CSF with blasts)

4

Testes

9

Other

Post Induction MRD

Percentage of leukaemic cells present at the end of induction

Code List

1

0%

R

Post Induction MRD (CT7700)

2

<0.01%

3

<0.1%

4

<1%

5

<5%

6

≥5%

9

Unknown

Treatment Response

To indicate the patient’s response to treatment

Code List

01

CR - Complete Response 

R

N/A

02

MRD+ - Minimal Residual Disease Positive

03

VGPR - Very Good Partial Response

04

GPR - Good Partial Response

05

SD - Stable Disease

06

PD - Progressive Disease

99

NE - Non Evaluable

00

Death

Chronic Myeloid Leukaemia (CML) Data Items. Record in addition to the Core Haematopoietic and Lymphoid Data Items & Lymphoma Core Data Items

Primary Induction Failure

Did the patient fail to achieve morphological remission after induction chemotherapy

Code List

Y

Yes

R

Primary Induction Failure (CT7110)

N

No

9

Not known

Sokal Index (Chronic Myeloid Leukaemia)

Index derived from age at diagnosis, spleen size, platelet count, myeloblasts %

max n1.n1

N/A

N/A

D

Sokal Index (Chronic Myeloid Leukaemia) (HA8010)

Blood Myeloblasts Percentage

Myeloblasts as percentage of total white cells.    

Note: This is a derived data item where the absolute value of myeloblasts /white cell count x 100 = % blood myeloblasts

max n3
%. Range 0-100

N/A

N/A

D

N/A

Blood Basophils Percentage

Basophils as percentage of total white cells.    

Note: This is a derived data item where the absolute value of basophils /white cell count x 100 = % blood basophils

max n3
%. Range 0-100

N/A

N/A

D

N/A

Blood Eosinophils Percentage

Eosinophils as percentage of total white cells.    

Note: This is a derived data item where the absolute value of eosinophils /white cell count x 100 = % blood eosinophils

max n3
%. Range 0-100

N/A

N/A

D

N/A

BCR Level ABL Ratio at 12 months

Record the BCR Level ABL Ratio at 12 months

Note: Undetectable must be recorded as text as clinically it is not the same as 0%

Record % with 4 decimal places e.g., 0.0032 or Undetectable

N/A

N/A

R

N/A

Molecular Response at 12 months

Record the result of the molecular response at 12 months

max n3
%. Range 0-100

N/A

N/A

R

N/A

Treatment Response

To indicate the patient’s response to treatment

Code List

99

NE - Non Evaluable

R

N/A

07

BC - Blast Crisis

08

AD - Accelerated Disease

09

CP - Chronic Phase BCR/ABL PCR > 0.1%

10

LMR - Loss of MR3

11

MR3 - Molecular Response 3 – BCR/ABL PCR <0.1%

12

MR4 - Molecular Response 4 – BCR/ABL PCR <0.01%

13

MR5 - Molecular Response 5 – BCR/ABL PCR <0.001%

Chronic Lymphocytic Leukaemia (CLL) Data Items. Record in addition to the Core Haematopoietic and Lymphoid Data Items & Lymphoma Core Data Items

Primary Induction Failure

Did the patient fail to achieve morphological remission after induction chemotherapy

Code List

Y

Yes

R

Primary Induction Failure (CT7110)

N

No

9

Not known

CD38 Status

To indicate the CD38 status

Code List

Y

Yes

M

N/A

N

No

CD38 % cell population

Record the CD38 % cell population

max n2.max n2

N/A

N/A

M

N/A

p53 Deletion Status

To indicate the p53 status

Note: No = No abnormality = 0 points, Yes = deletion 17p by FISH or TP53 mutation or sequencing = 4 points

Code List

Y

Yes

M

N/A

N

No

Splenomegaly Indicator

Spleen enlargement identified from clinical examination

Code List

Y

Yes

M

Splenomegaly Indicator (HA8210)

N

No

Immunoglobulin Heavy Gene Rearrangement (IGHV) Status

Record the IGHV Status

Code List

1

Mutated

M

N/A

2

Unmutated

Binet Stage

Prognostic index derived from platelet count, Hb, lymphadenopathy, hepatomegaly and splenomegaly. 
 
Note: Immune cytopenias are not calculated when calculating the Stage (i.e. if Platelet count is below 100 and/or Haemoglobin levels are below 110 as a result of immune cytopenia).

Code List

A

Stage A:  if platelet count >99 and Hb >99 and 0, 1 or 2 areas of organ enlargement (number of lymph node groups plus score 1 for hepatomegaly, 1 for splenomegaly)

D

Binet Stage (HA8240)

B

Stage B: if platelet count >99 and Hb >99 and 3, 4 or 5 areas of organ enlargement

C

Stage C: if Hb <100 or platelet count <100

RAI Stage

Record the RAI Stage for the patient

Note: This is a derived data item as follows:
Stage 0 - Lymphocytosis only (>4x10^9/L)
Stage 1 - Lymphocytosis + lymph node enlargement
Stage 2 - Lymphocytosis + spleen or liver (+/- lymph nodes)
Stage 3 - Lymphocytosis + anaemia (Hb<110g/L) (+/- spleen or liver, nodes)
Stage 4 - Lymphocytosis + thrombocytopenia (Platelets <100x10^9/L) (+/- spleen or liver, nodes)

Code List

0

Stage 0

D

N/A

1

Stage 1

2

Stage 2

3

Stage 3

4

Stage 4

CLL-IPI

Record the prognostic index

Note: This is a derived data item as follows:
Age: 65 years or under = 0 points
Age: >65 years = 1 point
Clinical Stage: Binet A or RAI 0 = 0 points; any other stages = 1 point
Serum Beta-2 microglobulin: 3.5 or less = 0 points; anything >3.5 =  2 points
Immunoglobulin heavy gene rearrangement (IGHV mutational status): Mutated = 0 points; Unmutated = 2 points
P53: No abnormality = 0 points; deletion 17p by FISH or TP53 mutation or sequencing = 4 points

max n2
Range 0-10

N/A

N/A

D

N/A

Treatment Response

To indicate the patient’s response to treatment

Code List

01

CR - Complete Response 

R

N/A

02

MRD+ - Minimal Residual Disease Positive

03

VGPR - Very Good Partial Response

04

GPR - Good Partial Response

05

SD - Stable Disease

06

PD - Progressive Disease

99

NE - Non Evaluable

00

Death

Myelodysplasia (MDS) Data Items. Record in addition to the Core Haematopoietic and Lymphoid Data Items & Lymphoma Core Data Items

Bone Marrow Blasts

Blast cells in bone marrow aspirate as percentage of all nucleated cells.  Normally taken from laboratory report on diagnostic bone marrow. 

max n3
%. Range 0-100

N/A

N/A

M

Bone Marrow Blasts (CT7330)

IPSS-R (Myelodysplasia)

The Revised International Prognostic Scoring System (IPSS-R) for Myelodysplastic Syndromes Risk Assessment Calculator is derived from Haemoglobin, Absolute Neutrophil Count, Platelets and Bone Marrow Blasts as:
Haemoglobin (g/dL) [4-20] – A possible conversion for Hb values: 10 g/dL= 6.2 mmol/L, 8 g/dL= 5.0 mmol/L
Absolute Neutrophil Count (x10⁹/L) [0-15]
Platelets (x10⁹/L) [0-2000]
Bone Marrow Blasts (percent) [0-30]
Cytogenetic Category
The following website: https://www.mds-foundation.org/ipss-r-calculator/ is an online
calculator for the IPSS- R scoring system.

max n1.n1

N/A

N/A

D

IPSS-R (Myelodysplasia) (HA9000)

Treatment Response

To indicate the patient’s response to treatment

Code List

01

CR - Complete Response 

R

N/A

14

HI - Hematologic Improvement

91

NR - No Response

05

SD - Stable Disease

15

Prog from Hi - Progression from Hematologic Improvement

16

Rel from CR - Relapse from Complete Response

17

Prog to AML - Progression to AML

Myeloma Data Items. Record in addition to the Core Haematopoietic and Lymphoid Data Items & Lymphoma Core Data Items

Plasma Cell Count in Peripheral Blood

Highest plasma cell count in peripheral blood pre treatment (x10^9/L)  

max n3.max n1

N/A

N/A

R

N/A

Creatinine Level

Level of creatinine measured in umol/L at diagnosis/pre-treatment

max n4

N/A

N/A

R

N/A

eGFR (Estimation of Glomerular Function)

Level of Estimated Glomerular Filtration Rate measured at diagnosis/pre-treatment

max n3. Units ML/min/1.73m^2) where m^2 is meters squared: m to the power of 2

N/A

N/A

R

N/A

Calcium

Level of calcium measured in mmol/L at diagnosis/pre-treatment

max n2.max n2

N/A

N/A

R

N/A

Lactate Dehydrogenase Level (LDH)

Lactate Dehydrogenase level in serum measured pre-treatment.  Normally provided from Biochemistry laboratory before treatment.

Code List

A

Above normal

R

N/A

B

Not above normal

9

Test not done

Cytogenetic Group Risk Code

Cytogenetic Group risk factor based on cytogenetic analysis

Code List

1

Standard risk

R

N/A

2

High risk

3

Failed

9

Not done

FISH

Cytogenetic analysis of bone marrow for prognostic purposes

Code List

01

Normal

R

N/A

02

t (4;14)

03

t (14;16)

04

t (14;20)

05

p53-

06

1q+

07

1p-

08

Failed

99

Not done

Paraprotein Level

Paraprotein level at diagnosis/pre-treatment g/dl

maxn2.max n1

R

N/A

Paraprotein Subtype

Paraprotein sub type at diagnosis/pre-treatment

Code List

1

IgA

R

N/A

2

IgD

3

IgE

4

IgG

5

IgM

6

Non-secretory

Serum Free Light Chains

Type of serum free light chain produced at diagnosis/pre-treatment

Code List

1

Kappa

R

N/A

2

Lambda

3

K:L Ratio

4

K:L Ratio Normal

ISS Stage

International Staging System for Myeloma derived from Beta-2 microglobulin and Albumin lab results

Code List

1

Stage I: Beta 2 M < 3.5mg/L and Albumin greater than 34g/L

R

N/A

2

Stage II: Not meeting criteria for stage I or III (B2M <3.5mg/L and Albumin <35g/L OR B2M 3.5-5.5mg/L)

3

Stage III: B2M >5.5mg/L

R-ISS Stage for Myeloma

The Revised International Staging System (R-ISS) includes variables included in the
original ISS (serum beta-2 microglobulin and serum albumin), while also including the
additional prognostic information obtained from serum LDH and high-risk chromosomal
abnormalities detected by interphase fluorescent in situ hybridisation (iFISH) after

CD138 plasma cell purification.

Code List

1

Stage I - ISS Stage 1 and standard-risk chromosomal abnormalities by iFISH and normal LDH

M

R-ISS Stage for Myeloma (HA9100)

2

Stage II - Not R-ISS Stage I or III

3

Stage III - ISS Stage III and either high-risk chromosomal abnormalities by iFISH or high LDH

MRI Outcome

Specific outcome results following MRI recorded at diagnosis/pre-treatment

Code List

1

Normal

R

N/A

2

Focal lesions (more than 1 >0.5 cm)

3

Signal Change

4

Extramedullary disease

9

Not done

PET-CT Outcome

Specific outcome results following PET-CT recorded at diagnosis/pre-treatment

Code List

1

Normal

R

N/A

2

Focal lesions (more than 1 >0.5 cm)

3

Extramedullary disease

9

Not done

Bone Disease on CT/Plain Film

Specific outcome results of bone disease following CT scan or plain films recorded at diagnosis/pre-treatment

Code List

1

Lytic

R

N/A

2

Fracture

3

Plasmacytoma

0

None

Treatment Response

To indicate the patients best/maximum response to treatment

Code List

01

CR - Complete Response 

R

N/A

03

VGPR - Very Good Partial Response

18

PR - Partial Response

05

SD - Stable Disease

19

PP - Plateau Phase

06

PD - Progressive Disease

99

NE - Non Evaluable

Mixed Phenotype Acute Leukaemia Data Items. Record in addition to the Core Haematopoietic and Lymphoid Data Items & Lymphoma Core Data Items

Primary Induction Failure

Did the patient fail to achieve morphological remission after induction chemotherapy

Code List

Y

Yes

R

Primary Induction Failure (CT7110)

N

No

9

Not known

Mixed Phenotype Symptoms (at Diagnosis)

Record if any of the associated symptoms were present at diagnosis

Code List

1

Hepatomegaly

R

Mixed Phenotype Symptoms (at Diagnosis) (CT7200)

2

Splenomegaly

3

Lymphadenopathy

4

Mediastinal mass

EGIL Score

The EGIL score (European Group for the Immunological Classification of Leukaemia) assigns score points to major antigens to determine if certain lineage is present

Code List

1

2 - points

R

EGIL Score (CT7240)

2

1 - point

3

0.5 - point

Stem Cell Transplantation. Record if Patient Eligibility Status for Stem Cell Transplantation is recorded as Eligible

Stem Cell Infusion Source *

Source of stem cells for infusion

Note: This data item is also in the Core standard, however, is included here as it is a requirement for the Haematology site-specific standard if Patient Eligibility Status for Stem Cell Transplantation is recorded as Eligible

Code List

B

Bone Marrow

R

Stem Cell Infusion Source (CR8600)

P

Peripheral Blood

C

Cord

9

Not Known

Stem Cell Infusion Donor *

Donor for stem cell infusion.

Note: This data item is also in the Core standard, however, is included here as it is a requirement for the Haematology site-specific standard if Patient Eligibility Status for Stem Cell Transplantation is recorded as Eligible

Code List

1

Autologous

R

Stem Cell Infusion Donor (CR8610)

2

Allogeneic - Sibling

3

Allogeneic - Haplo

4

Allogeneic - Unrelated

9

Not Known

Conditioning Regimen *

Record the Stem Cell Transplant Conditioning Regimen

Note: This data item is also in the Core standard, however, is included here as it is a requirement for the Haematology site-specific standard if Patient Eligibility Status for Stem Cell Transplantation is recorded as Eligible

Code List

1

Myeloablative

R

Conditioning Regimen (CR8620)

2

Reduced Intensity

3

Minimal Intensity

Polycythaemia Vera. Record in addition to the Core Haematopoietic and Lymphoid Data Items & Lymphoma Core Data Items
 

JAK2 Status

To indicate the JAK2 Status for the patient

Note: Required to derive the PV Prognostic Score

Code List

1

Positive

M

N/A

2

Negative

PV Prognostic Score

Prognostic Score for Thrombosis

Note: This is a derived data item from Vascular Occlusion, marrow fibrosis at diagnosis, JAK2 status, CALR Status, CALR Type, MPL status and Spleen size.

Code List

1

Very Low Risk

D

N/A

2

Low Risk

3

Intermediate Risk

4

High Risk

Treatment Response

To indicate the patient’s response to treatment

Code List

01

CR - Complete Response 

R

N/A

14

HI - Hematologic Improvement

91

NR - No Response

05

SD - Stable Disease

15

Prog from Hi - Progression from Hematologic Improvement

16

Rel from CR - Relapse from Complete Response

Essential Thrombocythemia. Record in addition to the Core Haematopoietic and Lymphoid Data Items & Lymphoma Core Data Items
 

JAK2 Status

To indicate the JAK2 Status for the patient

Note: Required to derive the R-IPSET Score

Code List

1

Positive

M

N/A

2

Negative

R-IPSET Score

International Prognostic Score for Thrombosis in Essential Thrombocythemia (ET).

Note: This is a derived data item from Vascular Occlusion, marrow fibrosis at diagnosis, JAK2 status, CALR Status, CALR Type, MPL status and Spleen size. For information on the methodology see http://bloodref.com/myeloid/mpd/ipset-thrombosis

Code List

1

Low Risk

D

N/A

2

Intermediate Risk

3

High Risk

Treatment Response

To indicate the patient’s response to treatment

Code List

01

CR - Complete Response 

R

N/A

14

HI - Hematologic Improvement

91

NR - No Response

05

SD - Stable Disease

15

Prog from Hi - Progression from Hematologic Improvement

16

Rel from CR - Relapse from Complete Response

Myelofibrosis. Record in addition to the Core Haematopoietic and Lymphoid Data Items & Lymphoma Core Data Items
 

JAK2 Status

To indicate the JAK2 Status for the patient

Note: Required to derive the IWG-MRT prognostic score

Code List

1

Positive

M

N/A

2

Negative

IWG-MRT Score

International Working Group (IWG) consensus criteria for treatment response in myelofibrosis with myeloid metaplasia, for the IWG for Myelofibrosis Research and Treatment (IWG-MRT) score.

Note: This is a derived data item from Vascular Occlusion, marrow fibrosis at diagnosis, JAK2 status, CALR Status, CALR Type, MPL status and Spleen size. For information on the methodology see: http://bloodref.com/myeloid/mpd/myelofibrosis-prognosis  

Code List

1

Low Risk

D

N/A

2

Intermediate Risk -1

3

Intermediate Risk -2

4

High Risk

DIPSS
(Dynamic International Prognostic Scoring System)

Record the DIPSS score for the patient.  This estimates survival in patients with myelofibrosis.  

Note: This is a derived data item from Age, Constitutional Symptoms, White Cell count, Hb, Peripheral Blood Blasts %. For information on the methodology see: https://www.mdcalc.com/dipss-dynamic-international-prognostic-scoring-system-myelofibrosis

The score has a range of 0-5 and corresponds with the adjacent values as follows:
Score 0 = Low risk
Score 1-2 = Intermediate Risk 1
Score 3-4 = Intermediate Risk 2
Score 5 or more = High Risk

Code List

1

Low Risk

D

N/A

2

Intermediate Risk -1

3

Intermediate Risk -2

4

High Risk

DIPPS Plus
(Dynamic International Prognostic Score System Plus)

Record the DIPSS Plus score for the patient.   This estimates the prognosis in patients with myelofibrosis. 


Note: This is a derived data item from Age, Constitutional Symptoms, White Cell count, Hb, PB Blast, Karyotype, Transfusion Dependent, Platelets. For information on the methodology see: https://qxmd.com/calculate/calculator_315/dipss-plus-score-for-prognosis-in-myelofibrosis

The score has a range of 0-4 and corresponds with the adjacent values as follows:
Score 0 - Low Risk
Score 1 - Intermediate Risk 1
Score 2-3 = Intermediate Risk 2
Score 4 or more  = High Risk

Code List

1

Low Risk

D

N/A

2

Intermediate Risk -1

3

Intermediate Risk -2

4

High Risk

Treatment Response

To indicate the patient’s response to treatment

Code List

01

CR - Complete Response 

R

N/A

14

HI - Hematologic Improvement

91

NR - No Response

05

SD - Stable Disease

15

Prog from Hi - Progression from Hematologic Improvement

16

Rel from CR - Relapse from Complete Response