The Kampala Cancer Registry was established in the Department of Pathology of Makerere Faculty of Medicine l (now the College of Health Sciences, Makerere University) in 1951 as a population-based cancer registry with the aim of determining cancer incidence in the population of Kyadondo County.
Personnel include a pathologist as a Director, a Cancer Registrar and an Assistant Cancer Registrar. All are employees of Makerere University.
The Registry has recruited staff of the information services of various hospitals and medical units to assist in coordinating collection of data directly. For other hospitals, hospices and histopathology laboratories, the registrars make visits at least once a month, during which the hospital records - including admission and discharge registers, clinical notes and pathology reports – are consulted. For each case, both demographic and cancer diagnostic data are sought. Certification of death is only carried out for legal reasons and is very incomplete, so death certificates are not used as a source of information by the registry.
The registry is computerized and data management is carried out using the IARC/IACR CANREG software which includes checks for consistency and validity and permits search for potential duplicate registration. Completeness of registration was evaluated in 2001 as around 90% of adult cancer cases. Confidentiality is taken care of by using only registration numbers during analysis of data. The registry is out of bounds for unauthorized persons.
Kampala Cancer Registry
Department of Pathology – College of Health Sciences, Makerere University
PO Box 7072
Tel: +256 41-531730 / 558731 / 17
Fax: +256 41-530412 / 543895
The Kampala Cancer Registry collects data on the population of Kyadondo County, which includes the city of Kampala - the capital of Uganda - and a peri-urban area extending some 30 Km to the North. Kyadondo County lies on the equator at a longitude of approximately 340 E and covers an area of 1914 km2
The inhabitants come from all of the 31 ethnic groups found in Uganda, although the majority (about 50%) is from the Ganda ethnicity. There are also many migrants from neighbouring countries, particularly from Kenya, Sudan and Rwanda. One percent of the population is of European and Asian origin. The main activities of the residents include trade, administration, professional and semi-professional jobs, personal services, and plant and machine operators. Subsistence farming is also practiced including in the urban areas. Fifty percent of the population are Catholic, 30% are Anglican, 15% Muslim and 5% other religion. Population was estimated as 2,010,000 in 2007.
Since the inception of the registry in 1951, the county covered has not changed boundaries. From the most recent census of 2002 by the Uganda Bureau of Statistics (UBOS), there has been a high population increase in the urban and rural areas of Kyadondo County. In addition, an increasing number of people come to urban areas to look for work and for better standards of living than in rural villages, and these factors may influence incidence rates of cancer in this community. Another factor which may influence incidence rates of cancer is the availability of diagnostic services, which is improving, particularly in the urban areas. PSA screening and mammography are done on an individual basis. Uganda has been active in programmes for prevention and control of HIV-AIDS, with a variety of governmental, voluntary and research organisations providing free diagnosis and treatment with ARVs. This has resulted in a change of incidence of AIDS related cancers.
Use of the data
The registry provides the longest time series of cancer incidence in Africa. This makes the data of special value for cancer surveillance and research, particularly in monitoring the epidemic of HIV/AIDS and as a baseline for analytical studies and intervention studies. Screening programmes are non existent. However attempts are being made to start cervical cancer screening, and this is because of the reporting in the recent past of high rates of cancer of the cervix in Kyadondo County.
A report for the years 2007-2009 was published in August 2012 and is available here.
The registry has published its data in various books, including the Cancer Incidence in Five Continents series Volume I, VII, VIII, IX and X, and in numerous journal articles, as well as participating in a wide variety of research studies:
- Wabinga HR, Nambooze S, Amulen PM, Okello C, Mbus L, Parkin DM. Trends in the incidence of cancer in Kampala, Uganda 1991-2010. Int J Cancer. 2014 July 135(2):432-439
- Wabinga H, Parkin DM, Nambooze S, Amero J. Cancer survival in Kampala, Uganda,1993-1997. IARC Sci Publ. 2011;(162):243-7
- Parkin DM, Nambooze S, Wabwire-Mangen F, Wabinga HR. Changing cancer incidence in Kampala, Uganda, 1991-2006. Int J Cancer. 2010 Mar 1;126(5):1187-95
- Mbulaiteye SM, Katabira ET, Wabinga H, Parkin DM, Virgo P, Ochai R, Workneh M, Coutinho A, Engels EA. Spectrum of cancers among HIV-infected persons in Africa: the Uganda AIDS-Cancer Registry Match Study. Int J Cancer. 2006 Feb 15;118(4):985-90
- Gondos A, Brenner H, Wabinga H, Parkin DM. Cancer survival in Kampala, Uganda. Br J Cancer. 2005 May 9;92(9):1808-12. PubMed PMID: 15827554
- Wabinga H, Ramanakumar AV, Banura C, Luwaga A, Nambooze S, Parkin DM. Survival of cervix cancer patients in Kampala, Uganda: 1995-1997. Br J Cancer. 2003 Jul 7;89(1):65-9. PubMed PMID: 12838301
- Parkin DM, Wabinga H, Nambooze S. Completeness in an African cancer registry. Cancer Causes Control. 2001 Feb;12(2):147-52
- Wabinga HR, Parkin DM, Wabwire-Mangen F, Nambooze S. Trends in cancerincidence in Kyadondo County, Uganda, 1960-1997. Br J Cancer. 2000 May;82(9):1585-92
- Wabinga HR, Parkin DM, Wabwire-Mangen F, Mugerwa JW. Cancer in Kampala,Uganda, in 1989-91: changes in incidence in the era of AIDS. Int J Cancer. 1993 Apr 22;54(1):26-36