Skip to main content

Table 2 European initiatives that focus on improving sarcoma care

From: Working to improve the management of sarcoma patients across Europe: a policy checklist

Initiative

Links

The European Organisation for Research and Treatment of Cancer (EORTC) Soft Tissue and Bone Sarcoma Group (STBSG) develops and coordinates studies on all aspects of sarcomas within the framework of the EORTC. They have an extensive standardised clinical trial database used for various other research projects. Currently, there are 54 member institutions from 14 countries in the group [38].

http://www.eortc.org/research_field/soft-tissue-bone/

European CanCer Organisation (ECCO) Essential Requirements for Quality Cancer Care: Soft Tissue Sarcoma in Adults and Bone Sarcoma (2017). They provide oncology teams, patients, policymakers and managers an overview of the elements needed in any healthcare system to provide high-quality care throughout the sarcoma patient’s journey [6].

http://www.croh-online.com/article/S1040-8428(16)30361-4/fulltext

Sarcoma PAtients EuroNet (SPAEN) policy paper: Sarcoma Patient Pathway Analysis and recommendations for Service Development (2016). This paper outlines what patients expect sarcoma treatment to look like, how they expect services to be structured and developed to respond to patient needs, and how referral practices should evolve internationally [7].

http://www.sarcoma-patients.eu/en/dings/19-spaen-policy-paper-on-quality-care-in-sarcomas-now-available

EURO EWING consortium – international clinical trials to improve survival from Ewing sarcoma (EEC project) (2014–2018). This initiative is coordinated by University College London and involves 20 European partners. It is funded by the European Union’s Framework Programme 7 (FP7). It is a coalition of clinical study groups to bring greater patient access to clinical trials, promote sharing of knowledge and improve patient results [39].

http://www.euroewing.eu

euroSARC project. Funded by the European Union’s Framework Programme 7 (FP7), it aims to design, structure and implement European clinical trials on rare sarcoma subtypes within an integrated translational study network [40].

http://eurosarc.eu/

Conticabase – European sarcoma database and tumour bank. The database currently stores information on 16,689 sarcoma patients in Europe, including tumour characteristics, treatment and follow-up, as well as tumour samples [41].

https://conticabase.sarcomabcb.org/