Print this pageCancer Notification Instructions
Notification of cancer is a requirement under the Public Health Act, 1991. This website has been designed to assist notifying facilities to better understand their responsibilities in providing cancer notifications to the NSW Central Cancer Registry. Reporting facilities should also refer to NSW Health Department Circular 2001/96 for advice on the requirements, which is available to download by clicking on the following link.
| QUESTION: |
| Who should notify? |
| ANSWER: |
The following institutions are required to notify cases of cancer under the Public Health Act 1991:
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| QUESTION: |
| What should be notified? |
| ANSWER: |
Please notify the following conditions (note the exceptions described below): With the introduction of ICD-O Third Edition in 2002, a number of conditions previously considered of uncertain or unknown behaviour in ICD-10 AM are now classified as malignant and are now notifiable conditions. These conditions, described below, currently have ICD10 AM codes beginning with D and L.
Although squamous cell carcinomas of the skin are not notifiable (see exceptions below), the following invasive skin cancer codes ARE notifiable.
Cancer related conditions that are NOT notifiable (Exceptions) If in doubt please contact the Cancer Institute NSW Central Cancer Registry on (02) 8374 5749 for advice. |
| QUESTION: |
| When should notifications be submitted? |
| ANSWER: |
Notifications are provided at different times depending on the institution: Hospitals, day procedure centres, nursing homes:Notify patients when cancer is the principal or an additional diagnosis for the episode of care. That is care was provided for cancer during the admission. Notify patients receiving recurrent chemotherapy only once a year unless a new cancer is diagnosed. Radiation oncology departments, outpatient clinics:Notify patients when they are first referred to a radiotherapy department or a medical oncology clinic. Notification is only required once per year for the same cancer. If treatment commences for another primary cancer, a new notification should be submitted. Pathology Laboratories:
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| QUESTION: |
| What data items are collected on the Cancer Notification form? |
| ANSWER: |
Q1 Name of Hospital Always identify your institution by code and text. The NSW Central Cancer Registry issues a unique code for each facility. If you do not know your facility’s code, please contact the Registry on (02) 8374 5749. This field is used by the Registry if further information about the patient is required. It is also used to monitor the number of notifications received from each provider to ensure capture of all patients. Q2 Unit Record Number/Medical Record Number Enter the hospital unit record number or medical record number. It is used by the Registry when information is requested from or supplied to hospitals. Q3 Family Name Please print legibly in BLOCK CAPITALS the patient's family name. Please pay particular attention to spelling the surname. Otherwise duplicate registrations may occur. Q4 Given Names Please print legibly in BLOCK CAPITALS all known given names of the patient as this assists to accurately identify the patient. Please pay particular attention to spelling otherwise duplicate registrations may occur. Q5 Former Name(s)/Pseudonym(s) If known, include maiden name or former married name, previous name if changed by law, and pseudonyms or aliases for either surname or given names. This assists in accurately identifying the patient and prevents duplicate registrations. Q6 Sex Please ensure that the appropriate box is ticked as given names are not always reliable indicators of sex. This assists in accurately identifying the patient and prevents duplicate registrations. Q7 & 8 Residential Address Please enter the patient's usual residential address, not the address of persons with whom they may be staying while being treated. A postcode should be included. The place of residence is used to ensure correct matching of records relating to a single patient and for statistical analysis of variations in geographical distribution of cancer. Q9 & 10 Date of Birth and Age Please provide the patient’s date of birth in DD MM YYYY format (use age of the patient if the date of birth is not known and cannot be obtained). Q11 Aboriginal, Torres Strait Islander, both Aboriginal and Torres Strait Islander (TSI) or neither Please tick the appropriate box. This item is essential for getting accurate information about the health of Aboriginal and Torres Strait Islander people and is endorsed by the National Advisory Group Aboriginal and Torres Strait Islander Health Information and Data (NAGATSIHID). Q12 Country of Birth Please enter the name of the country of birth of the patient IN FULL. Do not use abbreviations because some abbreviations may cause confusion. For example, 'U.K' may be confused with United Kingdom or 'unknown'. Country of birth is used to determine whether people are of English speaking or non English speaking background. It is an important indicator of cancer risk. Country of birth may also indicate local environmental risks that patients may have been exposed to which could impact on their risk of developing cancer. Knowledge of such factors provides the basis for many cancer prevention and control programs. Q13 Medicare Number Please provide the patient's Medicare number, if known, as it assists in patient identification. Q14 & Q15 Doctors' Names Please provide the name (including first name or initial when known) and address (at least suburb) of the patient's general practitioner or referring doctor. Please print clearly. When further information is needed for notified cases, the Registry may seek it from the attending medical officer, the patient's usual general practitioner, or the referring doctor. Q16 & Q17 Dates of Admission & Separation Please insert date of admission and separation in DD MM YYYY format. For radiation oncology departments, please insert date of attendance in the boxes in Q16 for "Date of Admission" and leave Q17, "Date of Separation", blank. This assists the Registry in assigning the date of first definitive treatment. Q18 Status at Separation Please indicate whether the patient was alive or dead at the time of separation by ticking the appropriate box. This information is collected for survival rates of cancer patients which assist with monitoring and evaluating the quality of cancer treatment, the outcomes of cancer care and the performance of cancer control programs. Q19 More than one Primary Cancer A notification form is required for each primary cancer even when they occur in the same site. Multiple primary information is used extensively by epidemiological studies. Q20 Date of Diagnosis of this Cancer The date used to assign the month and year of diagnosis should be the first of the following which is applicable to the cancer: (a) date of first consultation at, or admission to, a hospital, clinic or institution for the cancer in question. (b) date of first diagnosis of the cancer by a physician or dentist. (c) date of first pathology report in which cancer is mentioned. (d) date of death when the cancer was first found at autopsy and was not suspected clinically during life. Please do not tick “not known” unless, after substantial enquiry, you are unable to find a date of diagnosis in the record that conforms to (a), (b), (c) or (d) above. This is a key field used for tracking the progression of the cancer. It indicates the timeliness of the data and determines when the reported cancer will be included in incidence and mortality reports. It is also a key criterion used for Patient Recruitment studies. Q21 Was this person a resident of NSW or ACT at diagnosis Please tick the appropriate box and, if diagnosed outside NSW or the ACT, please state place of diagnosis. The NSW Central Cancer Registry only registers people resident in NSW or ACT at the time of their diagnosis, however, notifications relating to residents of other States or the Northern Territory are passed on to the relevant Cancer Registry. Q22 Primary Site of Cancer The primary site is the organ or tissue in which the cancer originated (e.g., tongue, bone, breast etc.). Please be as specific as possible, e.g., "ascending colon" not "colon"; "melanoma of skin of leg" not just “melanoma”. If the cancer is one of lymphatic or haematopoietic tissue the type of cancer should be stated here, e.g. Hodgkin's disease, acute myeloid leukaemia. Where the primary site has not been determined, state "primary site unknown". Q23 Laterality of Cancer Tick the appropriate laterality for cancers of paired organs, e.g., right breast. For other organs tick “Not applicable or not known”. Also tick “Not applicable or not known” if you are unable to find out the laterality of a cancer of a paired organ. The Registry collects this information for use in epidemiological studies. Q24 Histological (Morphological) Type of Cancer The cancer's histology or morphology is the pathological type of cancer as determined by microscopic examination, e.g., adenocarcinoma, small cell carcinoma, melanoma, chronic lymphatic leukaemia, non-Hodgkin's lymphoma. If a pathology report is available, the summary of the microscopic findings at the end of the report is usually sufficient to give you the information required. The morphology or histology of the tumour and its behaviour provide one of the most important items of medical information about a tumour and is critical for selecting treatment and measuring survival outcomes.Q25 Name of Pathology Laboratory If a pathological examination has been performed please write the full name of the laboratory which did the examination. This could be either the hospital laboratory or a laboratory external to the hospital. This will help us obtain additional information when necessary. Q26 Best basis for diagnosis at this admission Please tick the appropriate box based on the evidence available in the admission record. Histology should be considered better than cytology which, in turn, should be considered better than any other basis for diagnosis (e.g. clinical examination, imaging, biochemical tests etc.). The method by which cancer in a patient is confirmed is a gauge of the reliability of the diagnosis. The most conclusive method is microscopic examination of tissues, also known as histological confirmation. This may be the initial histology of the primary site or post-mortem examination with concurrent or previous histology. Q27 Degree of Spread of Cancer at this admission Please tick the box beside the highest applicable category of (a), (b), (c) and (d) unless the item is “unknown” or “not applicable”. For lymphatic and haematopoietic neoplasms (e.g., myelomas, leukaemias and lymphomas), "Not Applicable" should always be ticked. This category should also be used if the patient has no known residual cancer and for example has been admitted for adjuvant therapy. The following definitions should be used for categories (a), (b), (c), (d) and (e): Localised to organ of origin: Includes a primary cancer where the spread is contained within the organ of origin. Note (this includes in situ breast (D05.0-D05.9) and in situ melanoma (DO3.0-D03.9) Invasion of adjacent tissues or organs: a primary cancer has spread to adjacent organs or tissue not forming part of the organ of origin. This category includes subcutaneous fat or muscle and organs adjacent to the primary cancer site. Regional lymph nodes: the cancer has metastasised to the nearby draining lymph nodes. Distant metastases: the cancer has extended directly to organs that are not adjacent to it, formed discontinuous metastases in any other organ or tissue except regional lymph nodes, or metastasised to distant lymph nodes. Unknown: no information is available on the extent of spread of cancer at this admission, or available information is insufficient to allow classification into one of the preceding categories. Collecting information on the degree of spread of the cancer helps in comparisons of outcomes from particular treatments, for example survival of early versus late stage breast cancer. Q28 Main procedures for Cancer at this admission The 'principal procedure' for cancer at this admission (a) is the most significant procedure that was performed for treatment of cancer at this admission. It may not be the same as the principal procedure for the admission if cancer is not the principal diagnosis. The 'other procedure' is the next most significant procedure performed for cancer at this admission. Please do not list operations performed at previous admissions or elsewhere. This information assists with monitoring and evaluating the quality of cancer treatment, the outcomes of cancer care and the performance of cancer control programs. Signature of Chief Executive Officer or Delegate and date Please ensure that the form is signed and dated by the Chief Executive Officer or Delegate. |
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| Where can I find more information on the Cancer Notification items? | |||||||||||||||||||||||||||||||||||||||||||||||||||||||
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For a detailed description of data dictionary items collected on the Cancer Notification Form, please download the following documents in either PDF or Word format.
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| QUESTION: |
| How do I order a Cancer Notification Forms Booklet? |
| ANSWER: |
The Cancer Registry Cancer Notification forms are available from the NSW Central Cancer Registry. Orders may be phoned through to (02) 8374 5749, faxed to (02) 8374 5744 or e-mailed to ccr@cancerinstitute.org.au If your facility currently submits notifications using the Registry’s Cancer Notification Forms but would like to submit notifications electronically, please contact the Central Cancer Registry’s Data Quality Manager on (02) 8374 5749 to find out how this process occurs. |
| QUESTION: |
| How can the NSW Central Cancer Registry be contacted? |
| ANSWER: |
The NSW Central cancer Registry can be contacted to provide further clarification on notification issues or to support you in coding related issues. Please contact us using the details below: NSW Central Cancer Registry Cancer statistical information for your area can be obtained using Cancer statistics online: www.statistics.cancerinstitute.org.au |
