History of NCR
The Namibia National Cancer Registry (NNCR) was started in 1995, when Rössing Uranium mine, in co-operation with the Namibian Ministry of Health (Oncology clinic) and the Cancer Association of Namibia, collected all cancer cases reported to the Windhoek state pathology laboratory and the single existing private pathology laboratory from 1979 to 1994. From 1995 onwards, the Namibia National Cancer Registry commenced active registration of both pathology-based and clinical cases for four sentinel regions (Erongo, Oranjemund, Oshakati and Khomas). Cases that are diagnosed in South Africa are re-routed to the Namibian registry via a network of registries, which are technically supported by the International Agency for Research on Cancer (IARC). The Namibia National Cancer Registry aims to provide a database of information that will ultimately lead to improved cancer prevention and control among the Namibian population.
The Namibia National Cancer Registry is a population-based registry.
Location of the Registry
The registry is based at the premises of the Cancer Association of Namibia (90 John Meinert Street, Windhoek-West, WINDHOEK). There is a separate office with one computer linked to a server; this is used for data entry. Transport, technical and administration support are provided by the Association, as required.
The registry is co-managed by Mr R. Hansen, CEO of the Cancer Association of Namibia. The Technical Leader is Ms L. Horn (Cancer Association of Namibia) and Dr. A. Zietsman and the staff of the Dr A.B. May Cancer Care Centre guide with data input and patient identification.
The registry covers the entire population of Namibia 2,104,900 at the 2011 census. Map of Namibia shows the 13 regions and the population of each.
Source of finance
The International Association of Cancer Registries (IARC) and African Cancer Registry Network (AFCRN) cover some costs pertaining to the registry. The Cancer Association of Namibia (WO30) funds all other registry activities.
Data collection by the Namibia National Cancer Registry
The NNCR attempts to record for each cancer patient, first name and surname, date of birth or approximate age, I.D. number, gender, marital status, ethnic origin, current residential address, place of birth, tobacco and alcohol use, reproductive history (for females), date of cancer diagnosis, histology number, tumour site and histology, clinical stage of disease, basis of diagnosis, treatment given, vital status, and date and cause of death.
Until late 2010 data from the cancer registration form were entered into CanReg4 Software (Cooke et al., 2001; Cook et al., 2005). The data were migrated to CanReg5 (http://canreg.iarc.fr) in late 2010 and the data were validated and duplicates were identified using check and conversion programs for cancer registries (Ferlay et al., 2005). Tumour site and histology were coded using ICD-0-3 (2) (Fitz et al., 2001) at the time of data entry, but were converted to ICD-10 for the tabulation of cases. Since 2010 ICD-10 has been used to code cancer sites.
Sources of information for the registry
There are two large state hospitals in Windhoek: Central Hospital (which includes the Dr A.B. May Cancer Care Centre) and Katutura Hospital, and a referral hospital in each region of the country. A cancer centre recently opened at Oshakati Intermediate Hospital. In addition, there are five private hospitals in Windhoek (Roman Catholic, Rhino Park, Medi-Clinic, Paramount and Lady Pohamba).
During 2015 the Namibia Oncology Centre (NOC) – a specialized private cancer treatment facility – opened its doors; the first of its kind for Namibia.
At present, primary data collection takes place at the Dr A.B. May Cancer Care Centre and the Namibia Oncology Centre to which all cancer patients are supposed to be sent for assessment and possible treatment if private or state. Paramount Hospital and GVI Oncology in Namibia also serve as data collection and patient referral points.
There are two pathology laboratories in the country: the state run National Institute of Pathology (NIP) and the private run, PathCare. Some information on cases from Namibia is also received from a laboratory in Cape Town (Dr Holm).
The pathology reports from NIP include demographic data, but place of residence is noted in less than one third of these. The print-out received from PathCare does not include personal details, only the age and sex of the subject. For this reason, completeness of data remains a great concern, and the registry and Cancer Association of Namibia have been actively engaged with the Ministry of Health and Social Services to have cancer declared a reportable disease. In addition, active case finding throughout the vast country should be urgently implemented.
There is no service for clinical haematology.
Death registry – Civil registration of deaths, by cause, is the responsibility of the Ministry of Home Affairs. Permission to access to copies of certificates for cancer cases was granted from 2016 only. This is because a new electronic registry and databank is finally in place. The quality of information as to cause of death is not known.
Methods of registration
Case finding relies upon receipt of registration forms, completed by nursing staff in the admissions unit of the Dr A.B. May Cancer Centre, NOC and copies of pathology reports, as described above. Currently, there is no active case finding and minimal follow-up in Namibia, unless conducted by staff of the Cancer Association of Namibia on an ad-hoc basis. Lack of funding in this regard hampers this part of the project, as only the Cancer Association of Namibia and some donors who agree on the urgency of data pertaining to incidence reports cover costs relating to the NNCR.
The registry is housed at the Cancer Association of Namibia in a dedicated office. A desktop computer is used for data entry employing the specialised cancer registration software running in a Microsoft Windows environment. CanReg5 is employed.
Prior to data analysis, the data were exported as a comma-separated-values dataset and these data were checked using the IARC check and conversion programs. This generated a set of data that were manually checked by registry staff who updated the data in CanReg5 for analysis.
There are five published cancer incidence in Namibia reports (1989-1994, 1995-1998, 2000-2005; and 2006-2009). The latest is the Cancer incidence in Namibia report (2010 – 2014) published in 2017.
• Koehler S. Namibia’s cancer atlas: 1989-1994. Namibia National Cancer Registry 1997.
• Stein L, Sitas F, Zietsman A, Gariseb B, Rautenbach N, Pontac J and Johannesson I. Cancer in Namibia 1995 - 1998, Namibia Cancer Registry, Windhoek 1999.
• Carrara H, Stein L, Sitas F, Zietsman A, Gariseb B, Rautenbach N, Pontac J, Johannesson I and Ferlay J. Cancer in Namibia 2000-2005, Namibia Cancer Registry, Windhoek 2009.
• Carrara H, Stein L, Sitas F, Zietsman A, Gariseb B, Rautenbach N, Pontac J, Rooi T, and Taapopi L. Cancer in Namibia 2006-2009, Namibia Cancer Registry, Windhoek 2011.
• Carrara H, Hansen R, Koegelenberg R, Zietsman A, et al. Cancer incidence in Namibia 2010-2014, Namibia National Cancer Registry, Windhoek 2017.
A number of other publications and conference abstracts have been prepared.
• The NNCR has already contributed to the body of literature on Cancer in Africa (Parkin et al., 2003; Parkin et al., 2008; Sitas et al., 2008, Ferlay et al, 2010 – the WHO/IARC database GLOBOCAN 2012).
• ASB van Dyk, RN, LF Small, A Zietsman, The Pain Experience and its management in cancer patients during hospitalization (in Namibia) Health SA Gesondheid Vol.5 No.4 – 2000.
Updated: 8th May 2017