One of the main limitations in advancing our
understanding of childhood cancer is our limited knowledge of its causes. The
differences in the incidence of cancer among children around the globe are very
intriguing; it is possible that the interaction of environment, genetics,
socioeconomic conditions, and ethnic factors influence the occurrence of cancer
in some areas. In this regard, research on the epidemiology of childhood cancer
in Central America can open the door to the study of potential causes.
Cancer information in Central America is scarce (there is only one
population-based cancer registry in Costa Rica). In addition, there are few researchers in
Central America with expertise in childhood cancer epidemiology. The GHI
has partnered with Unidad
Nacional de Oncología Pediátrica (UNOP) and Hospital Nacional de Niños
Benjamin Bloom in El Salvador to establish the first national pediatric cancer
registry and create a childhood cancer epidemiology
consortium in Central America.
About cancer registries: Population-based cancer registries serve principally two purposes. The
primary purpose is to provide the data for planning and evaluation of cancer
control and treatment. Cancer registration allows health policy-makers to
assess and address inequalities in prevention, access and care within and
between countries according to factors such as ethnicity, occupation,
socioeconomic status. Cancer registration is also used to assess the impact of
interventions designed to promote early diagnosis, such as screening or
provider education. The second purpose of cancer registration is to serve as
the basis for epidemiological studies. For instance, using the limited data
currently available, variations in incidence of pediatric cancer appear to be
quite significant if one examines incidence rates in Low- and Middle-Income
Countries versus High-Income Countries. The development of a
population-based cancer registry is a critical step in the evolution of
pediatric cancer care and evaluation in Central America and will directly
inform the allocation of health resources and advance clinical,
epidemiological, and health services research.
This is a pilot study to evaluate the feasibility of
establishing a centralized review program for specific solid tumors in Central
America, while at the same time strengthening local capacity by training
pathologists and transferring knowledge among pilot sites. This knowledge-exchange
model is innovative as it goes beyond the typical mentor-mentee format and
creates regional expertise which would eventually function independently.
Impact: In addition to a large number of patients in the
three pilot sites benefiting immediately from this project, we are also
building a sustainable program that will impact many more patients in the
future. It would be impossible for families and the local foundations in the
selected Central American sites to pay for expert pathology consultation. Three
local pathologists also directly benefit, but pathologists from all sites who
are members in the Central America Association of Pediatric Hematologists and
Oncologists (AHOPCA) will be included in the quarterly review sessions. In summary, the project is simultaneously beneficial
to patients, physicians, and the center and through focus on development and
mentoring of regional experts the longevity if its impact is maximized.
About centralized pathology review: Centralized pathology review contributes to
accurate diagnosis and correct therapeutic risk assignment for children with
cancer. In North America, centralized pathology review has become
standard practice in several collaborative studies; at least in part because
the rate of diagnostic discrepancy between local and expert pathologists can be
as high as 30%. In Central America, a region in which we have established
long-term partnerships, general or pediatric pathologists must establish these
diagnoses, yet opportunities to develop expertise are limited by the relatively
low frequency of each disease at each center, lack of educational opportunities
in pediatric oncologic pathology, and lack of a coordinated structure to
provide regional mentorship. Finally, improving diagnostic accuracy would
strengthen ongoing projects to improve pediatric cancer registration in the
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