Highlights
- •Rare adult cancer is characterized by an incidence of <6/100,000 people/year and are linked with the worst survival.
- •Worse prognosis is due to delays for diagnosis, inadequate treatments and less opportunities to participate in clinical trials.
- •One method to improve treatment results is to address the complexity of care and to promote more teamwork in care.
- •French example highlights importance of network with regional organization to maximize the efforts for a majority.
- •European Union supports a dedicated network. Goals are pooling knowledge and expertise of 67 EU reference centres across 18 countries.
Abstract
Rare adult cancer (RAC) is characterised by an incidence of less than six cases per
100,000 people per annum; 4,300,000 patients in the European Union are living with
rare cancer (22% of all new human cancers). These cancers are linked with worse survival
rates than ‘frequent’ tumours (5-year survival: 47% for RAC against 65% for ‘common’
cancers), mainly because of: (1) delays in obtaining an accurate diagnosis, (2) inadequate
treatments given in curative phases and (3) restricted opportunities for patients
to participate in clinical trials because of the lack of support for dedicated trials
for this disease group from both academic and industrial sponsors. Although quantitative
studies to measure the socioeconomic burden of RACs as a whole are still lacking,
the increasing fragmentation of all cancers into molecular subgroups implies a substantial
increase in the number of RACs and their associated socioeconomic burden. To answer
this urgent and growing need, some countries, cooperative groups, and cancer institutes
delineated national and/or regional organisations to promote quality management for
RACs. Currently, the European Union (EU) is supporting an official EU call to organise
a European network dedicated to RACs. The goals will be to pool the vast knowledge
and expertise of the 67 EU clinical reference centres and to cover ten rare adult
solid cancer domains across more than 18 countries in order to deploy an integrated,
EU-wide capacity towards accelerated innovative treatments and care for RACs while
empowering patients. This article will summarise these experiences and the potential
benefit for patients.
Keywords
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Article info
Publication history
Published online: April 03, 2017
Accepted:
February 5,
2017
Received:
January 27,
2017
Identification
Copyright
© 2017 Elsevier Ltd. All rights reserved.
