Page 0137

treatment and period of diagnosis;

‰ studying the proportion of patients who received

different treatments, according to the guidelines for

standard care;

‰ analysis of the time to initiation of treatment, which can

be used in estimating the need for additional facilities (for

radiotherapy, systemic treatment) in certain regions in

order to ensure equal access to treatment.

The information provided by BNCR about patients

diagnosed in advanced stages, can be useful in planning

resources for palliative care. Through links with other data

sources (hospital information systems, etc.) patients with

progressions of the disease (metastases) can be identified in

order to accurately assess the needs of palliative care.

Although BNCR has sufficient data to participate in each

stage of cancer control, the use of such data by responsible

state institutions and policy-makers is incidental and is well

below the potential opportunities the data provides. At the

same time, some changes that have taken place in recent

years in the organization of health care in Bulgaria may affect

data collection as regional oncology centres and university

hospitals are no longer the only places where cancer patients

can receive treatment. The decentralization of cancer care

reflects negatively on the quality of data collected at the

cancer registry, because the sources of information are more

heterogeneous and very often incomplete which requires

more effort for cancer registrars to ensure completeness. The

legal framework for cancer registration is also outdated (it

has not been updated since 1964) and does not reflect the

current changes in the health care system. Funding from the

Ministry of Health (which is the only funding source) is limited

and not sufficient to cover all national and regional cancer

registry activities. An economic evaluation study of cancer

registration in Europe performed by the EUROCOURSE

project (www.eurocourse.org), showed that cost per

inhabitant versus size of population under registration and

cost per case by population covered in 2010 for Bulgaria was

among the lowest in Europe. All these issues have been

discussed at meetings with the participation of the cancer

registry and Ministry of Health representatives, but the

difficult economic and political situation in the country has

taken them off the Ministry's priority list.

Despite these challenges, BNCR is participating in

all major European and International projects based

on cancer registry data: EUROCOURSE, EUROCARE

(www.eurocare.it), CONCORD (http://www.lshtm.ac.uk/

eph/ncde/cancersurvival/), Cancer Incidence in Five

Continents (ci5.iarc.fr), International Incidence of Childhood

Cancers (iicc.iarc.fr), RarecareNet (www.rarecarenet.eu), and

EPAAC (www.epaac.eu). Every year BNCR publishes a

"Cancer Incidence in Bulgaria" series (www.sbaloncology.bg),

with the last report (for 2011) available in 2013. BNCR has

initiated collaborations with clinicians for different projects,

such as "Patterns of systemic treatment of colorectal patients

in Bulgaria", "Adherence to standard care for breast cancer in

Bulgaria", "Multiple primary tumours in familial breast cancer

patients" and several others. BNCR data is also used in some

recent publications based on population cancer registries

information.10-17

Despite functioning with a very limited budget in a

situation where the legal framework is outdated and cancer

care is decentralized, BNCR has maintained its cancer

registration system and upholds a proud tradition dating back

over 60 years. With the support not only from the state

institutions responsible, but also from medical and patient

societies, and non-governmental organizations, interested in

cancer prevention, treatment and research, BNCR has the

potential to expand its role in cancer control. l

Dr Nadya Dimitrova graduated from the Medical University in

Sofia, Bulgaria, in 1997. She specialized in general medicine and

health management and worked as a general practitioner for

nine years. In 2007 she joined the Bulgarian National Cancer

Registry staff and since 2010 has been the Head of the registry.

Dr Nadya Dimitrova has additional qualifications in cancer

epidemiology and population-based survival analysis. In 2013,

she completed her PhD in Oncology.

REGIONAL INITIATIVES

136 CANCER CONTROL 2014

Although BNCR has sufficient data to

participate in each stage of cancer

control, the use of such data by

responsible state institutions and

policy-makers is incidental and is well

below the potential opportunities the

data provides

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