| dc.description.abstract | The International Agency for Research on Cancer estimates that worldwide, by 2020 there will be 15
million new cases of cancer a year, 70% of which will occur in developing countries1. It is feared that
most cases of cancer in Africa will be diagnosed at advanced or metastatic stages2, 3. In most
developing countries, Africa included, priority for cancer care is rated low, as more emphasis is placed
on the control of communicable diseases and improving environmental sanitation. Developing
countries are liable to be exposed to further risks of cancer with increasing industrialization,
urbanization and intensification of agriculture in the course of development4. The presence of an
adequate information system is an essential part of any cancer control strategy5.
Traditional cancer registries are population-based6 and seek to describe incidence, rates and trends of
all cancers within set populations. In Kenya there are currently two such registries: the Nairobi Cancer
Registry and the Eldoret Cancer Registry which serve the Nairobi and Uasin Gishu District
populations respectively 6, 7. The Cancer Abstract Forms employed by these registries are used to
collect 27 data items covering patient demographics, tumor details, treatment, data sources and followup
information7. These data make the population registries suitable for: routine population health
surveillance, comparing the incidence and trends of cancer in Kenya with others internationally,
quality assurance activities and providing representative samples for patterns of care surveys8.
However, population-based registries have their shortcomings: the range of data collected by
population-based registries is adequate for broad public health surveillance, but too narrow for clinical
and other more specific service applications. In particular, these registries rarely collect data on stage
of cancer at diagnosis, treatment information, time from diagnosis to first recurrence, and other
outcomes apart from survival. While histological sub-types of cancers are identifiable, other subtypes
defined by receptor status, biochemical and other markers are not routinely collected. Yet another
shortfall of these registries is the timeliness of the data given that incidences and trends are a function
of the larger population8.
Clinical cancer registries provide the complementary staging, treatment and allied clinical data
required to monitor clinical care and outcomes. Additionally they can be used in conjunction with
other data sources to monitor and assess the effectiveness of new treatment protocols, compare
patterns of care with guidelines and survival effects of different diagnostic and treatment practices to
determine best practice8. These clinical cancer registries also allow for the expansion of the research
parameters to allow for linkages with bio-specimen banks for future proteomics and genomics studies.
Clinical registries have been shown to therefore supplement the effectiveness of population-based
registries in improving cancer patient care9.
The Kenya Oncological Research Database (KORDA) project was established in 2008 in order to
establish a platform for the multi-clinician, multi-centric collation of clinical oncology datasets. We
present our experiences and challenges in setting up the database and discuss prospects for the future. | en |
