Northern Territory Cancer Registry Notification Manual...v0.1 ‐ v0.6 KC, SD, FJ Draft versions 29/11/2018 Internal v0.7 MG Comments on draft 22/1/2019 Review by MJ/HH v0.8 SD Minor

DEPARTMENT OF HEALTH

Northern Territory Cancer Registry

Notification Manual

A guide to the identification and reporting of cancers to the Northern Territory Cancer Registry (NTCR)

EDOC2019/23534 v1.1

Northern Territory Cancer Registry Notification Manual v1.1

DEPARTMENT OF HEALTH Page 2 of 18 ,

Contents Northern Territory Cancer Registry (NTCR) contacts .............................................................................. 3

Version control ........................................................................................................................................ 3

Purpose of this document ....................................................................................................................... 4

Introduction ............................................................................................................................................ 5

Establishment of the Northern Territory Cancer Registry .................................................................. 5

The Act and Regulations ..................................................................................................................... 5

Role of the NTCR ................................................................................................................................. 5

Cancer notification guidelines ................................................................................................................ 6

Step 1: WHO should report cancer? ................................................................................................... 6

Step 2: Which PATIENTS should be reported? .................................................................................... 6

Step 3: Which CANCERS are reportable? ............................................................................................ 6

Step 4: Which FIELDS are reportable? ................................................................................................ 7

Step 5: How should reports be SENT? ................................................................................................ 7

Step 6: HOW OFTEN should cancers be reported? ............................................................................. 7

Appendix 1 Common hospital cancer notification scenarios ............................................................. 8

Appendix 2 NTCR reportable ICD‐10 cancer codes ............................................................................ 9

Appendix 3 Non‐melanoma skin cancer reporting flowchart .......................................................... 12

Appendix 4 Mandated reporting fields ............................................................................................ 13

Appendix 5 Hospital reporting of cancer form ................................................................................ 16

Appendix 6 Summary of notification requirements ........................................................................ 17

Key associated documents .................................................................................................................... 18



Northern Territory Cancer Registry (NTCR) contacts

Please contact us if you have any reporting questions or need advice on a particular case.

NT Cancer Registry Northern Territory Health Innovation and Research PO Box 40596 Casuarina NT 8010

[email protected] Fax: (08) 8985 8075

Registrar Dr Shu Qin Li [email protected] (08) 8985 8085

Data Manager Ms Sarah Dugdale [email protected] (08) 8985 8078

Epidemiologist Vacant

https://health.nt.gov.au/professionals/health‐gains/northern‐territory‐cancer‐registry

Version control

Title Northern Territory Cancer Register Notification Manual (EDOC2019/23534)

Created By Kim Coulter – Senior Policy Officer Innovation & ResearchSarah Dugdale – NTCR Data Manager Fiona Johnston – NTCR Epidemiologist

Date Created October 2018

Maintained By NTCR Data Manager

Version # Modified By Modifications Made Date Status

v0.1 ‐ v0.6 KC, SD, FJ Draft versions 29/11/2018 Internal

v0.7 MG Comments on draft 22/1/2019 Review by MJ/HH

v0.8 SD Minor editing and layout 30/1/2019 User consultation

v0.9 SD Post consultation 15/2/2019 Final for approval

v1.0 SD Approved for release 12/03/2019 Publication

v1.1 SD Weblink updates 22/03/2019 PGC and web



Purpose of this document

Under the NT Cancer (Registration) Act 2011, 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.



Cancer notification guidelines

Step 1: WHO should report cancer? Under the Cancer (Registration) Act 2011 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, bladder and melanoma cancers should be notified. 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



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/professionals/health‐gains/northern‐territory‐cancer‐registry Request PDF or hard copy forms from (08) 8985 8078 or email

[email protected]

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 7 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 7 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.



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”.



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. Some common skin cancers such as Basal Cell Carcinomas (M8090‐M8110) and Squamous Cell Carcinomas (M8050‐M8084) are not notifiable. See Appendix 4 for a flow chart to help decide which skin cancers are reportable.

NTCR reportable Primary Site Cancer Codes ICD‐10‐AM (9th edition, 2015)*

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 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

C51 Vulva (if skin of vulva report Basal Cell Carcinomas and Squamous Cell Carcinomas) C52 Vagina 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 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’s disease C82 Follicular (nodular) non‐Hodgkin’s lymphoma C83 Diffuse non‐Hodgkin’s lymphoma C84 Peripheral and cutaneous T‐cell lymphomas C85 Other and unspecified types of non‐Hodgkin’s lymphoma C86 Other specified types of T/NK‐cell lymphoma C88 Malignant immunoproliferative disease 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 unspecifed malignant neoplasms of lymphoid, haematopoietic and related tissue

D03 Melanoma in situ D05 Carcinoma in situ of breast D09.0 Bladder in situ D45 Polycythaemia vera D46 Myelodysplastic syndromes

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

*Australian Consortium for Classification Development. The international statistical classification of diseases and health related problems, 10th revision, Australian Modification (ICD‐10‐AM), 9th Edition. Independent Hospital Pricing Authority, Darlinghurst, 2015.

https://www.accd.net.au/


,

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”.

Appendix 3 Non‐melanoma skin cancer reporting flowchart

YES

NO

YES

NO

YES

Investigate and

determine if the site is

perianal skin/anal

margin. If so, report. If

not, do not report.

Investigate and

determine if the site is

perianal skin/anal

margin. If so, report. If

not, do not report.

NO

YES

BCC – Basal Cell Carcinoma M8090‐M8110 SCC – Squamous Cell Carcinoma M8050‐M8084 C44.X – ICD‐10 non‐melanoma skin cancer C51.X – ICD‐10 skin of vulva

C60.X – ICD‐10 skin of penis

C63.2 – ICD‐10 skin of scrotum

NO

NO

YES

YES

ICD‐10 site

C44.X Skin?

REPORT

CASE

REPORT

CASE

STOPDO NOT

REPORT

ICD‐10 site

C44.5 Skin

of trunk

BCC?

M8090‐

M8110

SCC?

M8050‐

M8084

ICD‐10 site

C44.5 Skin

of trunk

ICD‐10 site

C44.0 Skin

of lip

CHECK

FIRST

STOP DO NOT

REPORT

CHECK

FIRST

ICD‐10 site

C51.X skin of vulva, or

C60.X skin of penis, or

C63.2 skin of scrotum?

REPORT

CASE

START

NO

YES

Any melanoma or

non‐melanoma

cancer of these

sites, including BCC

M8090‐M8110 and

SCC M8050‐M8084

YES



Appendix 4 Mandated reporting fields Under the Cancer (Registration) Regulations 2011 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.

Former names Yes Yes Other names by which the person was commonly known.

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) TSI (3) Aboriginal and TSI (4) Not Aboriginal or TSI (9) Not stated.

Country of birth Yes Yes

Occupation Yes Yes

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.

Laterality Yes Yes (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; noninfiltrating; noninvasive – 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 millimeters.

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 Yes If a solid tumour has been diagnosed, the largest dimension or diameter of the primary tumour, in millimetres.

Stage of cancer Yes Yes The stage and group stage of the primary cancer, preferably according to the American Joint Committee on Cancer (AJCC) pTNM system.

Prior history of cancer

Yes Yes

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.

Date of death Yes When the patient has died in hospital and cancer is an underlying cause of death.

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.

LMO/GP Name of the patient’s General Practitioner.

Notes Free text area for coders to report any additional information.


DEPARTMENT OF HEALTH Page 16 of 18

Appendix 5 Hospital reporting of cancer form



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 and melanoma cancers 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 7 days of receiving the results.

Within 7 days. Within 42 days of the registration.



Key associated documents

Key Legislation, By‐Laws, Standards

NT Cancer (Registration) Act 2009 https://legislation.nt.gov.au/en/Legislation/Cancer‐Registration‐Act‐2009

NT Cancer (Registration) Regulations 2010 https://legislation.nt.gov.au/en/Legislation/Cancer‐Registration‐Regulations‐2010

References NT Cancer Registry website https://health.nt.gov.au/professionals/health‐gains/northern‐territory‐cancer‐registry

Cancer Council Victoria, 2018. Reportable Cancers Guide for Hospitals: Guide to the identification of cancers reportable to the Victorian Cancer Registry, https://registry.cancervic.org.au/downloads/Reportable‐Cancers‐Guide‐for‐Hospitals‐July‐2018.pdf

Documents

Northern Territory Cancer Registry Notification Manual...v0.1 ‐ v0.6 KC, SD, FJ Draft versions 29/11/2018 Internal v0.7 MG Comments on draft 22/1/2019 Review by MJ/HH v0.8 SD Minor