The South African National Cancer Registry (NCR), is a division of National Health Laboratory Services (NHLS). The NCR serves as South Africa’s main source of national cancer incidence data. Since 1986, the NCR has conducted pathology-based cancer surveillance, where data on cancer cases diagnosed by histology, cytology and bone marrow aspirate and trephine are collected, analysed and reported annually.
In 2011, Regulation no. 380 of the National Health Act no. 61 of 2003 was created to legally establish the NCR and to make cancer a reportable disease. The regulation provided a mandate to establish a population-based cancer registry. Since January 2017, population based cancer data are collected from Ekurhuleni metropolitan municipality in Gauteng Province. The Ekurhuleni Population Based Cancer Registry (EPBCR) meets the gold standard criteria for cancer registration worldwide as all cancers that are diagnosed clinically, radiologically and pathologically are collected.
The objectives of NCR are:
- To collect, analyse and report cancer statistics in South Africa;
- To guide and support the Department of Health on cancer initiatives and other cancer programs from NGOs, NPOs and any other parties interested in cancer prevention, control and care in South Africa; and
- To inform cancer policy and guideline in South Africa.
The South African National Cancer Registry (NCR) has been conducting national pathology-based cancer registration since its establishment in 1986. Data (demographic, clinical and reporting source) on cancer cases diagnosed either by histology, cytology, bone marrow aspirate and or trephine are submitted to NCR from both private and public laboratories across South Africa. The collected data is cleaned, analysed and reported in the annual cancer incidence report by sex, age and population groups. The national pathology-based cancer registry has been the primary source of cancer statistics for the country and has played a critical role in the development of cancer prevention and control policy for the country.
The national pathology-based cancer registry methodology follows that of the World Health Organisation (WHO) International Agency for Research on Cancer
Data sources include National Health Laboratory Services (NHLS), Ampath, Gritzman & Thatcher, Lancet, Vermaak and partners.
Data management flow
The Ekurhuleni population-based cancer registry (EPBCR) is a population-based cancer surveillance system that collects, analyses and reports all malignant cancers for individuals residing in the Ekurhuleni Metropolitan Municipality, Gauteng province of South Africa. The EPBCR was established in 2017 under the mandate of regulation no.380 of the National Health Act of 2003, access the National Health below.
The registry uses both active and passive methods of data collection, and the processes of data collection follow the rules and standards recommended by the International Agency for Research on Cancer, see Cancer Registration Principles here.
The EPBCR registrars also known as surveillance officers (SOs) use data-source tools such as medical files, pathology results, pharmacy prescription registers, cancer screening registers (e.g. Pap smear registers), hospital admission registers, hospice registers, private practitioners consultation registers/records, radiological registers (e.g. CT scan and X-rays), discharge registers, mortuary registers and outpatient registers to identify, trace and notify Ekurhuleni cancer patients.
The SOs use the Republic of South Africa Department of Health’s cancer registration form to notify only Ekurhuleni residents’ cancer diagnosis. The International Classification of Diseases for Oncology (ICDO-3) is used as a reference for the coding of neoplasms. Completed cancer notification forms are either electronically captured remotely at surveillance sites by the SOs or centrally at the National Cancer Registry (NCR) by dedicated data capturers. The data capturing is done through the use of the Research Electronic Data Capture (REDCap) database system. In addition to the notification forms, the South African Oncology Consortium (SAOC) and the South African paediatric oncology network submit electronic cancer data in the form of excel spreadsheets or SQL database exports to the NCR at regular intervals. The electronic data are coded and incorporated into the REDCap database.
Furthermore, the national pathology-based cancer registry data for Ekurhuleni Metropolitan Municipality is extracted for the year of surveillance and linked to REDCap database to identify cases that are missed by the SOs, SAOC and the South African paediatric oncology network. The list of missed cases is then provided to the SOs to trace the missing cases back to medical records at the relevant health facilities. Once the missing cases are identified, the medical records and the pathology records are consolidated and captured. When case notification for a particular year is completed, the REDCap database for that year will be closed for data quality control and data quality assurance workflows. All malignant cases (M-80003-99893) from all body sites (C00.0-C80.9), excluding non-melanoma skin cancer (C44), are exported into Stata® statistical software (StataCorp LLC, Texas, USA) for cleaning and analysis. The annual report is then drafted and released, reporting cancer counts, frequencies, crude rates, lifetime risks and age-standardised incidence rates by sex and population groups for each cancer and a total thereof. The Segi world standard population is used for standardisation and mid-year population estimates from Statistics South Africa (STATS SA) are used as the population denominator.
Data use and permission
Careful consideration needs to be taken when using the data for EPBCR. The statistics provided here are that of Ekurhuleni population only and are not to be confused with the statistics of the national pathology-based cancer registry.
Permission to use data can be sought from the NCR Head: Dr Elvira Singh
Currently, the National Cancer Registry includes all reported cases of childhood cancers (0-14years) within the annual pathology-based cancer incidence report. However, given the impact of childhood cancer on patients, families and society, the National Cancer Registry is working towards establishing a dedicated childhood cancer registry using the International Classification of Childhood Cancers (ICCC-3), as recommended by the International Agency for Research on Cancer (IARC).
This childhood cancer registry will provide a more complete and updated estimation of the burden of childhood cancer in South Africa. By publishing annual childhood cancer incidence reports, the NCR will increase awareness of childhood cancers amongst the general public, and the medical community so that there is a higher index of suspicion leading to earlier diagnosis and improved outcomes.
New cancer cases will be identified from the existing pathology-based registry, the Ekurhuleni population-based registry and notifications from clinicians.
Notification Of Childhood Cancers
Who Should Report?
As per No 380 regulation:
- Clinicians including Paediatric Oncologists and Clinical Haematologists
Any clinician who diagnoses a new case of cancer in a child under the age of 15 should submit a notification form within three months of diagnosis.
- Health establishments
The person in charge of a health establishment (including clinicians/nurses), where a diagnosis is confirmed must submit a notification form within three months of diagnosis.
The head of a laboratory, on a quarterly basis, must ensure that notification forms, as well as the accompanying laboratory reports, are completed and submitted to the NCR.
For further information or queries, please contact the NCR administrator, Ms Evelyn Nkosi, at EvelynN@nicd.ac.za or 011-555-0548.
- The South African HIV Cancer Match Study (SAM)
The National Health Laboratory Services (NHLS) laboratories serve over 80% of the South African population and provide the unique opportunity to link longitudinal laboratory HIV data from the NHLS to cancer data from the NCR. This allows for the assessment of cancer risk in HIV-positive people in the era of antiretroviral treatment (ART) availability in South Africa, at national level.
- The Johannesburg Cancer Study (JCS):
The aims of the Johannesburg Cancer Study are to determine whether risk factors identified for cancers in developed countries apply to Black (African) adult patients attending tertiary public hospitals in Johannesburg, South Africa, and to understand the impact of HIV on cancer risk, with a view to identifying previously unrecognised HIV associated cancers (which may themselves, have an underlying infectious cause).
3. Evolving Risk Factors for Cancers in African Populations (ERICA-SA) study:
Lifestyle, infection, genetic susceptibility and cancer in South Africa: development of research capacity and an evidence base for cancer control.
4. Men of African Descent and Carcinoma of the Prostate Network (MADCaP):
Cancer of the prostate (CaP) is the leading cancer among men in sub-Saharan Africa (SSA). A substantial proportion of these men with CaP are diagnosed at late (usually incurable) stages, yet little is known about the aetiology of CaP in SSA.
LEADERSHIP AND TEAM
Dr Elvira Singh is the Head of the South African National Cancer Registry, a division of the NHLS. She qualified with a medical degree in 2000 and completed her specialisation in Public Health Medicine in 2009 when she was awarded the Henry Gluckman Medal for the best candidate in the College of Public Health Fellowship examination. She represents the NCR on the Ministerial Advisory Committee on Cancer Prevention and Control and has a keen interest in optimising cancer surveillance for South Africa. She has a sound knowledge of the South African health system and her interests include health systems strengthening for cancer care, cancer surveillance and epidemiology.