Northern Territory Cancer Register Notification Manual

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Northern Territory Cancer Registry Notification Manual

A guide to the identification and reporting of cancers to

the Northern Territory Cancer Registry (NTCR)

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NT HEALTH

26 September 2022 | Version 1.3 Page 2 of 17

Document title Northern Territory Cancer Registry Notification Manual

Contact details

Northern Territory Cancer Registry Northern Territory Health

Health Statistics and Informatics PO Box 40596

Casuarina NT 0810

Email: [email protected] Phone: 08 8985 8078

Website: https://health.nt.gov.au/data-and-research/Innovation-and- research/northern-territory-cancer-registry

Document review Annually

TRM number EDOC2022/0395890

Version Date Author Changes made

1.0 12/03/2019 Sarah Dugdale First published version

1.1 22/03/2019 Sarah Dugdale Web links updated

1.2 12/07/2022 Shayne Pomeroy Contact information updated, inclusion of select benign cancers for reporting and reporting route changes

1.3 26/09/2022 Rowena Boyd Contact information and template updated

Acronyms Full form

ICD-10 International Statistical Classification of Diseases and Related Health Problems ²

NT Northern Territory

NTCR Northern Territory Cancer Registry TSI Torres Strait Islander

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Purporse of this document

Under the NT Cancer (Registration) Act 2009, it is a legal requirement for pathology laboratories, hospitals and the NT Registrar of Births, Deaths and Marriages to report all cancer diagnoses and deaths to the Northern Territory Cancer Registry. The purpose of this document is to provide an overview of those cancer reporting procedures and to assist with the correct identification of reportable cancers. It is intended for both new and existing notifiers.

Introduction

Establishment of the Northern Territory Cancer Registry

The Northern Territory Cancer Registry (NTCR) was established in 1981 by the then Northern Territory (NT) Department of Health and Families to collect information about cancer incidence and mortality.

In 1988 the Cancer (Registration) Act was passed to provide a legislative basis for the Registry, including protecting the privacy of people with cancer.

The Act and Regulations

The Act requires pathology laboratories, hospitals and the NT Registrar of Births, Deaths and Marriages to inform the Registry of all cases of cancer that have been diagnosed, and of all people who die of cancer, in the NT. Where information is incomplete the Registry is authorised to obtain additional information from treating doctors.

Follow these links to read the Act and Regulations:

 https://legislation.nt.gov.au/en/Legislation/Cancer-Registration-Act-2009

 https://legislation.nt.gov.au/en/Legislation/Cancer-Registration-Regulations-2010

Role of the NTCR

The NTCR publishes statistical reports on trends in cancer incidence (the number of new cases), mortality (deaths), survival and disparities in the NT. These reports do not include any personal information.

More detailed statistics are used by government departments, health care institutions, Cancer Council Northern Territory, health care professionals and health researchers to:

1. Plan and inform cancer education, treatment and research programs, and 2. Evaluate cancer prevention, screening, treatment and support services.

Like all Australian jurisdictions, the NTCR supplies data to the Australian Cancer Database so that national cancer statistics can be compiled.

On occasion, information about people with cancer, including identifying details, may be used for cancer research projects where it is shown the research will benefit the health of

Territorians. Identifying information is only provided for research approved by a Human Research Ethics Committee and is subject to strict confidentiality conditions.

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Cancer notification guidelines

Step 1: WHO should report cancer?

Under the Cancer (Registration) Act 2009 all cancer diagnoses and deaths must be reported to the NTCR by:

1. Any pathology laboratory processing specimens collected in the NT 2. (a) Public hospitals in the NT

(b) Private hospitals in the NT

3. The NT Registrar of Births, Deaths and Marriages.

Step 2: Which PATIENTS should be reported?

Pathology laboratories must report to the NTCR:

 Any person whose pathological specimen (a) was collected in the NT and

(b) indicates that the person is or was suffering from cancer.

NT public and private hospitals must report to the NTCR:

 Any person in an NT hospital diagnosed with cancer

 Any person who died in an NT hospital with cancer as an underlying cause.

Note: This includes patients diagnosed by any method (including clinical, histological, radiological or immunological), and is regardless of their usual residential address. Refer to Appendix 1 for common hospital cancer notification scenarios.

The NT Registrar of Births, Deaths and Marriages must report to the NTCR:

 Any person whose death registration shows cancer as a cause of death.

Step 3: Which CANCERS are reportable?

In general all invasive cancers and haematological malignancies, metastases and in situ breast, cervix, bladder and melanoma cancers should be notified. Benign Central Nervous System neoplasms are also reportable. Some common skin cancers such as Basal Cell Carcinomas and Squamous Cell Carcinomas are not notifiable.

See Appendix 2 for a complete list of currently reportable ICD-10 cancer codes, and see Appendix 3 for a flow chart to help decide which skin cancers are reportable.

Report to the NTCR:



All invasive cancers and haematological malignancies



(note: some common skin cancers are exempt)



Secondary or metastatic cancers



In situ breast, bladder and melanoma cancers



Benign and uncertain behaviour neoplasm of the central nervous

system

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Step 4: Which FIELDS are reportable?

A variety of demographic and cancer-specific fields are mandated under the Act. These differ slightly depending on who is reporting the cancer.

See Appendix 4 for a full list of mandated reporting fields.

NT public and private hospitals can use the Reporting of Cancer Form for ease of data collection:

 See Appendix 5 for a copy of the form

 Download a fillable PDF form from the NTCR website https://health.nt.gov.au/data- and-research/Innovation-and-research/northern-territory-cancer-registry

 Request PDF form from (08) 8985 8078 or email [email protected]

 Upon agreement with the NTCR, arrangements can be made to notify cancer diagnoses electronically

The NT Registrar of Births, Deaths and Marriages must report to the NTCR:

 The details contained in the death registration

Step 5: How should reports be SENT?

Cancer reports can be notified to the NTCR using a variety of methods, notwithstanding some are preferred because they offer more security and protection for confidential patient information.

PREFERRED METHOD OF REPORTING:

All notifiers send cancer reports in HL7 format via secure electronic transfer.

ACCEPTABLE ALTERNATIVE:

Reports are sent in other electronic formats such as CSV, XLS or PDF after discussion with NTCR staff regarding the method of transfer.

USE RARELY:

Faxes are acceptable on occasion, however should be restricted because of image quality loss and risk of interception on receipt.

MUST BE AVOIDED:

Hard copy forms sent via post or internal mail.

Step 6: HOW OFTEN should cancers be reported?

Pathology laboratories must report cases to the NTCR within 14 days of receiving the results.

NT public and private hospitals must report patients diagnosed with cancer, or who died in hospital with cancer as an underlying cause, to the NTCR within 21 days.

The NT Registrar of Births, Deaths and Marriages must report a person whose death

registration shows cancer as a cause of death to the NTCR within 42 days of the registration.

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Appendix 1 Common hospital cancer notification scenarios

A hospital cancer notification to the NTCR is required when a person, regardless of their usual residential address:

1. Presents to an NT hospital and is diagnosed with cancer. The diagnosis can be by any method, including clinical, histological, radiological, or immunological.

2. Presents to an NT hospital for the first time with an already known cancer that was diagnosed elsewhere. Even if a cancer is not specifically treated during the admission, it must still be notified.

3. Re-presents to an NT hospital with a change in the cancer disease status, such as:

Recurrence - Recurrence refers to the return or reappearance of cancer at the primary site, or appearance of a secondary (metastatic) cancer, of the same morphology, after a disease-free period (which can be months or years). Any new secondary sites relating to the recurrent primary should also be included in the registration.

Metastatic disease - The anatomical location(s) of secondary, or metastatic, cancer which has spread from the primary tumour site. Metastases may be localised or distant.

Disease progression/relapse - Disease progression/relapse/transformation is often indicated by a change in morphology. If the morphology of a previously reported cancer changes, then a new registration is required.

4. Presents to an NT hospital and is diagnosed with multiple primary cancers. A separate cancer registration is required for each primary cancer.

5. Dies at an NT hospital with cancer as an underlying cause

This work is adapted with permission from Cancer Council Victoria’s publication “Reportable Cancers Guide for Hospitals: Guide to the identification of cancers reportable to the Victorian Cancer Registry, 2018”.¹

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Appendix 2 NTCR reportable ICD-10 cancer codes

In general all invasive cancers and haematological malignancies, metastases and in situ breast, bladder and melanoma cancers should be notified. Benign and uncertain-behaviour neoplasms of the central nervous system are notifiable. Some common skin cancers such as Basal Cell Carcinomas (M8090-M8110) and Squamous Cell Carcinomas (M8050-M8084) are not notifiable. See Appendix 3 for a flow chart to help decide which skin cancers are reportable.

NTCR reportable Primary Site Cancer Codes ICD-10-AM (11th edition, 2019)

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C00 Lip, excludes skin of lip C44.0 (do not report Basal Cell Carcinomas) C01 Base of Tongue

C02 Tongue

C03 Gum

C04 Floor of mouth C05 Palate

C06 Unspecified parts of mouth C07 Parotid gland

C08 Salivary glands C09 Tonsil

C10 Oropharynx C11 Nasopharynx C12 Pyriform sinus C13 Hypopharynx

C14 Ill-defined sites of lip, oral cavity and pharynx C15 Oesophagus

C16 Stomach C17 Small intestine C18 Colon

C19 Rectosigmoid junction C20 Rectum

C21 Anus and anal canal

C22 Liver and intrahepatic bile ducts C23 Gallbladder

C24 Biliary tract C25 Pancreas

C26 Ill-defined digestive organs C30 Nasal cavity and middle ear C31 Accessary sinuses

C32 Larynx C33 Trachea

C34 Bronchus and lung C37 Thymus

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NTCR reportable Primary Site Cancer Codes ICD-10-AM (11th edition, 2019)

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C38 Heart, mediastinum and pleura

C39 Ill-defined sites in the respiratory system and intra-thoracic organs C40 Bone and articular cartilage of limbs

C41 Bone and articular of other and unspecified sites C43 Melanoma of skin

C44 Non-melanoma cancer of skin (do not report Basal Cell Carcinomas or Squamous Cell Carcinomas except in the following circumstances:

 C44.0 Skin of lip - report Squamous Cell Carcinomas

 C44.5 Skin of trunk - report Basal Cell Carcinomas and Squamous Cell Carcinomas ONLY if the site refers to skin of the perineum, anal margin or perianal region

C45 Mesothelioma C46 Kaposi sarcoma

C47 Peripheral nerves and autonomic nervous system C48 Retroperitoneum and peritoneum

C49 Connective and soft tissue C50 Breast

C53 Cervix uteri C54 Corpus uteri

C55 Uterus part unspecified C56 Ovary

C57 Other and unspecified female genital organs C58 Placenta

C60 Penis (if skin of penis report Basal Cell Carcinomas and Squamous Cell Carcinomas) C61 Prostate

C62 Testis

C63 Other and unspecified male genital organs (if skin of scrotum C63.2 report Basal Cell Carcinomas and Squamous Cell Carcinomas)

C64 Kidney, except renal pelvis C65 Renal pelvis

C66 Ureter C67 Bladder

C68 Other and unspecified urinary organs C69 Eye and adnexa

C70 Meninges C71 Brain

C72 Spinal cord, cranial nerves and other parts of central nervous system C73 Thyroid gland

C74 Adrenal gland

C75 Other endocrine glands and related structures C76 Malignant neoplasm of other and ill-defined sites

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NTCR reportable Primary Site Cancer Codes ICD-10-AM (11th edition, 2019)

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C77 Secondary and unspecified malignant neoplasm of lymph nodes C78 Secondary malignant neoplasm of respiratory and digestive organs C79 Secondary malignant neoplasm of other and unspecified sites C80 Malignant neoplasm without specification of site

C81 Hodgkin lymphoma C82 Follicular lymphoma C83 Non-follicular lymphoma C84 Mature T/NK-cell lymphomas

C85 Other and unspecified types of non-Hodgkin lymphoma C86 Other specified types of T/NK-cell lymphoma

C88 Malignant immunoproliferative diseases

C90 Multiple myeloma and malignant plasma cell neoplasms C91 Lymphoid leukaemia

C92 Myeloid leukaemia C93 Monocytic Leukaemia

C94 Other leukaemias of specified cell type C95 Leukaemia of unspecified cell type

C96 Other and unspecified malignant neoplasms of lymphoid, haematopoietic and related tissue D03 Melanoma in situ

D04.0 Skin of lip D04.5 Skin of trunk

D05 Carcinoma in situ of breast D06 Carcinoma in situ of cervix uteri D09.0 Bladder in situ

D33 Benign neoplasm of brain and other parts of central nervous system

D43 Neoplasm of uncertain or unknown behaviour of brain and central nervous system D45 Polycythaemia vera

D46 Myelodysplastic syndromes

D47 Other neoplasms of uncertain or unknown behaviour of lymphoid, haematopoietic and related tissues

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Appendix 3 Non-melanoma skin cancer reporting flowchart

This work is adapted with permission from Cancer Council Victoria’s publication “Reportable Cancers Guide for Hospitals: Guide to the identification of cancers reportable to the Victorian Cancer Registry, 2018” ¹

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Appendix 4 Mandated reporting fields

Under the Cancer (Registration) Regulations 2010 the following fields are prescribed as reportable by pathology laboratories and hospitals.

Reporting field Mandatory for

pathology Mandatory

for hospital Data Definition Laboratory

details Yes Name and address of place where specimen was

taken - and/or - Name and address of the laboratory where the pathological examination of the specimen took place.

Hospital details Yes Name and address or reporting hospital.

Patient

surname Yes Yes Last name or surname of the patient.

Patient given

names Yes Yes 1st and 2nd given names.

Aliases Yes Yes Alternate or any other names used by the patient.

Patient

HRN/UR No Yes The current NT Health Hospital Registration Number

– or – the Medical Record Number assigned by Darwin Private Hospital.

Street address Yes Yes Usual residential address at the time the tumour was diagnosed.

Suburb Yes Yes

Postcode Yes Yes

Date of birth Yes Yes DD/MM/YYYY.

Sex Yes Yes (1) Male (2) Female (3) Intersex or indeterminate (9) Unknown, not stated.

Indigenous

status Yes Yes (1) Aboriginal

(2) Torres Strait Islander (TSI) (3) Aboriginal and TSI

(4) Not Aboriginal or TSI (9) Not stated

Country of

birth Yes Yes

Occupation Yes Yes Australian and New Zealand Standard Classification of Occupations ³

Doctor Yes Yes Name and address of medical practitioner who

requested the pathological examination – or - Name of the medical practitioner responsible for the patient on the date of diagnosis or death

Diagnosis date Yes Yes Date of the initial cancer diagnosis (use date of collection of specimen, not the report date) DD/MM/YYYY

Primary site Yes Yes The primary cancer site indicating where the tumour arose. See Appendices 2 and 3 for the complete list of reportable ICD-10 codes

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for hospital Data Definition

Laterality Yes No (0) Not a paired site

(1) Right (2) Left

(3) Only one side involved, right or left unspecified (4) Bilateral involvement, single primary

(5) Paired site: midline tumour

(9) Paired site, but no information concerning laterality

Morphology Yes Yes Morphology or histologic type of the cancer, text or ICD

Behaviour The malignant potential (behaviour) of the tumour

being reported, text or ICD-10.

(0) Benign – not presently reportable

(1) Uncertain whether benign or malignant, borderline malignancy, low malignant potential, and uncertain malignant potential borderline – not presently reportable

(2) Carcinoma in situ; intraepithelial; non-infiltrating;

non-invasive – presently reportable for breast, bladder and melanoma

(3) Malignant, primary site Thickness of

melanoma Yes Yes If melanoma has been diagnosed, the measured thickness of the melanoma (Breslow’s depth) at the time of diagnosis, in hundredths of millimetres.

Invasion of

melanoma If melanoma has been diagnosed, the level of invasion

of the melanoma relative to the layers of the skin (Clark’s level).

Size of tumour Yes No If a solid tumour has been diagnosed, the largest dimension or diameter of the primary tumour, in millimetres.

Stage of

cancer Yes No The stage and group stage of the primary cancer,

preferably according to the American Joint Committee on Cancer (AJCC) pTNM system.

Most valid basis of diagnosis

Yes The highest level of diagnostic confirmation used to confirm the cancer being reported.

(0) Death certificate only

(1) Clinical diagnosis before death but without investigation

(2) Clinical investigation including radiology (4) Specific tumour markers

(5) Cytology

(6) Histology of metastasis (7) Histology of primary tumour (9) Unknown

Laboratory reference number

Yes Pathological examination reference number assigned to the specimen by the laboratory.

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for hospital Data Definition Cause(s) of

death Yes When the patient has died and cancer is an underlying

cause of death.

Admission date The date the patient was admitted to the hospital

DD/MM/YYYY.

Date of

separation The date the patient was discharged from the hospital

DD/MM/YYYY.

Separation

destination Home/Deceased/Transferred/Unknown.

Local medical officer/General Practitioner (GP)

Name of the patient’s General Practitioner.

Notes Free text area for coders to report any additional

information.

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Appendix 5 Hospital reporting of cancer form

Select ‘View/Open’ on the following web link for the NTCR Reporting of Cancer Form - interactive PDF

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Appendix 6 Summary of notification requirements

Step 1: WHO should

report cancer Pathology laboratories NT public and private

hospitals NT Registrar of Births, Deaths and Marriages Step 2: Which

PATIENTS should be reported

Any person whose pathological specimen:

(a) was collected in the NT, and

(b) indicates that the person is or was suffering from cancer

(a) Any person in an NT hospital diagnosed with cancer, or

(b) Any person who died in an NT hospital with cancer as an underlying cause

Note: This includes patients diagnosed by any method (including clinical, histological, radiological or

immunological), and is regardless of their usual residential address

Any person whose death registration shows cancer as a cause of death

Step 3: Which CANCERS are reportable

(a) All invasive cancers and haematological malignancies (note: some common skin cancers are exempt)

(b) Secondary or metastatic cancers

(c) In situ breast, bladder, cervix and melanoma cancers

(d) Benign and uncertain behaviour Central Nervous System Neoplasms See Appendix 2 for a complete list of reportable ICD-10 cancer codes, and see Appendix 3 for a flow chart to help decide which skin cancers are reportable

Step 4: Which FIELDS

are reportable See Appendix 4 See Appendix 4 All details contained in

the death registration

Step 5: How should reports be SENT

(a) Preferred method of reporting: All notifiers send cancer reports in HL7 format via secure electronic transfer

(b) Acceptable alternative: Reports are sent in other electronic formats such as CSV, XLS or PDF after discussion with NTCR staff regarding the method of transfer

Step 6: HOW OFTEN should cancers be reported

Within 14 days of

receiving the results Within 21 days Within 42 days of the registration

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Key Legislation, By-Laws and Standards

NT Cancer (Registration) Act 2009

https://legislation.nt.gov.au/en/Legislation/Cancer-Registration-Act-2009

NT Cancer (Registration) Act gazetted update – inclusion of benign and uncertain-behaviour neoplasms of the central nervous system as notifiable cancers

Northern Territory Government 2022 G27

NT Cancer (Registration) Regulations 2010

https://legislation.nt.gov.au/en/Legislation/Cancer-Registration-Regulations-2010

References

1. Cancer Council Victoria. Reportable Cancers Guide for Hospitals: Guide to the identification of cancers reportable to the Victorian Cancer Registry 2018. Available from:

https://registry.cancervic.org.au/downloads/Reportable-Cancers-Guide-for-Hospitals-July-2018.pdf.

2. World Health Organisation. International Statisical Classification of Disease and Related Health Problems 10th Revision (ICD-10) 2019. Available from: https://icd.who.int/browse10/2019/en.

3. Australian Bureau of Statistics (ABS). ANZSCO - Australian and New Zealand Standard Classification of Occupations 2021. Available from: https://www.abs.gov.au/statistics/classifications/anzsco-australian- and-new-zealand-standard-classification-occupations/2021

Northern Territory Cancer Register Notification Manual

Northern Territory Cancer Registry Notification Manual

A guide to the identification and reporting of cancers to

the Northern Territory Cancer Registry (NTCR)

Contents

Purporse of this document

Introduction

Establishment of the Northern Territory Cancer Registry

The Act and Regulations

Role of the NTCR

Cancer notification guidelines

Step 1: WHO should report cancer?

Step 2: Which PATIENTS should be reported?

Step 3: Which CANCERS are reportable?

Report to the NTCR:

All invasive cancers and haematological malignancies

(note: some common skin cancers are exempt)

Secondary or metastatic cancers

In situ breast, bladder and melanoma cancers

Benign and uncertain behaviour neoplasm of the central nervous

system

Step 4: Which FIELDS are reportable?

Step 5: How should reports be SENT?

Step 6: HOW OFTEN should cancers be reported?

Appendix 1 Common hospital cancer notification scenarios

Appendix 2 NTCR reportable ICD-10 cancer codes

NTCR reportable Primary Site Cancer Codes ICD-10-AM (11th edition, 2019)

NTCR reportable Primary Site Cancer Codes ICD-10-AM (11th edition, 2019)

NTCR reportable Primary Site Cancer Codes ICD-10-AM (11th edition, 2019)

Appendix 3 Non-melanoma skin cancer reporting flowchart

Appendix 4 Mandated reporting fields

Appendix 5 Hospital reporting of cancer form

Appendix 6 Summary of notification requirements

Key Legislation, By-Laws and Standards

References