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in Africa is registered (compared to 66% in Europe and 97% in

the United States) (28). Registries help to track the incidence

of new cancers in childhood, assess the extent and severity of

disease at diagnosis and evaluate outcomes. Hospital-based

cancer registries contribute to patient care by providing

accessible information on patients with cancer, the treatment

received and the outcomes. Specialized registries collect and

maintain data on particular types of cancer. Population-based

cancer registries (PBCR) collect data on all new cases of cancer

occurring in a well-defined population, usually a defined

region or country, and the emphasis here is on epidemiology

and public health (29). As the most important form of PBCR,

National Cancer Registries provide an invaluable resource of

information for policy planning and research (30). They will

enable us to tackle inequalities in access to appropriate care,

ultimately leading to earlier diagnosis, better management,

and improved outcomes for children with cancer in Africa. In

the SIOP Global Mapping Survey, responses were received

from 47/54 African countries, and 25 of these reported having

a national cancer registry.

Importance of national paediatric oncology societies

Dr Maria El Kababri, Assistant Professor, Department of Pediatric

Hematology and Oncology, Children's Hospital, Rabat, Morocco

A paediatric oncology society is an association of all

professionals working with children/adolescents with cancer

(e.g., paediatric oncologists, surgeons, radiation oncologists,

radiologists, pathologists, biologists, nurses, and researchers)

dedicated to the prevention, screening, diagnosis, treatment,

and follow-up of paediatric cancers. Its missions are:

J Develop recommendations on therapeutic prescriptions

and the organisation of paediatric oncology care.

J Promote research at national and international level.

J Create a space for dialogue between the various actors in

paediatric oncology and with the supervisory authorities.

J Contribute to the education and continuing training of

professionals and the evaluation of practices.

J Participate in the information and support of parents of

children/adolescents with cancer.

In Africa, the role of a national paediatric oncology society

is essential in the development of paediatric oncology,

especially if its action is focused on the specific problems of the

continent's countries and other similar contexts: continuous

training of personnel, facilitating access to care and essential

drugs, early diagnosis of paediatric cancers, and follow-up of

patients under treatment to prevent treatment abandonment

and reduce mortality. In addition, these societies organize and

coordinate multidisciplinary treatment networks for childhood


having an active clinical research programme (24). The finding

compares to 82% of 35 European countries reporting a national

childhood cancer research society or network when surveyed

by SIOP Europe in 2013 (16). LMICs offer a great potential for

patient recruitment to observational studies, including those

that define priority areas for intervention to improve survival

rates and those that investigate tumour biology and genetics in

the local population.

Units that are active in clinical research and cancer registration

processes are more likely to generate local evidence on safety

and efficacy of treatments used. When available, parents/

caregivers should be offered the opportunity to have their

child participate in relevant clinical trials and studies that aim

to improve the optimal treatment for all children/adolescents

with cancer. The best example on how information coming

from LMICs could influence treatment worldwide comes from

Hodgkin lymphoma. In the 1970s, it was treated with combined

radiotherapy and chemotherapy in HICs. However, the lack

of availability of radiotherapy in LMICs made it impossible

to administer radiotherapy with chemotherapy to patients,

and results later confirmed, that such combination regimens

were unnecessary for many patients in all countries (20,21).

Therefore, this is a two-way road in knowledge generation

(22). Nevertheless, barriers to oncology clinical trials in LMICs

have been well documented and calls for funding and capacity

building are on-going (19,23-25).

Treatment of cancer in children and young people is

constantly being refined and the best "standard of care"

is widely recognized as inclusion in a clinical trial or study,

even for newly diagnosed patients. Treatment protocol

recommendations need to be regularly updated, consistent

with the latest research findings. Optimal treatment should

be widely encouraged by a national childhood cancer research

network including across LMICs.

Importance of national cancer registry

Professor Alan Davidson, Head of the Paediatric HaematologyOncology Service, Red

Cross War Memorial Children's Hospital

and the University of Cape Town, South Africa

It is estimated that 41% of Africa's population (26) are under

15 years. Based on northern hemisphere data (140/m/year),

this means 77,000 new cases of paediatric cancer annually.

Recent data on survival for childhood cancer in sub-Saharan

Africa reveal some of the lowest survival rates in the world

for malignancies that in HIC have good rates of cure, including

retinoblastoma and Wilms tumour. A barrier to improving

these outcomes is the lack of accurate, population-based data

from LMICs on childhood cancer incidence, stage at diagnosis

and survival (27).

According to The Cancer Atlas, only 5.3% of childhood cancer


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