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Table 1 The Sarcoma Policy Checklist recommendations, published in February 2017

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

Recommendations What is needed in each country?
i. Each country should have at least one designated and accredited centre of reference for sarcoma • At least one national centre of reference, or a clear link to a centre of reference in another country
• National accreditation processes that designate centres of reference using specific quality standards
• Regular evaluation of centres of reference against these standards to ensure continuous quality of care
ii. All healthcare professionals involved in sarcoma care should have access to specialised training • Training on rare cancers included in the general medical curriculum
• Specialised training programmes on sarcoma for all healthcare professionals involved in the sarcoma multidisciplinary care team
• National referral protocols for suspected sarcoma patients, which advise non-specialists of ‘red flag’ symptoms and when to refer patients to centres of reference
iii. Sarcoma patients should receive multidisciplinary care delivered by a specialised sarcoma team • All sarcoma patients treated by multidisciplinary teams (MDTs) according to a clear care pathway
• A clear definition of the minimum composition of a MDT
• National guidelines for the treatment of all sarcomas (children and adults)
• A dedicated key health worker and a personalised care plan for each patient
iv. There should be greater incentives for research and innovation in sarcoma care • Incentives for public–private partnerships
• National and international research collaborations for sarcoma
• A national sarcoma registry with a standardised dataset to allow comparable real-world data collection across centres of reference
v. Sarcoma patients should have more rapid access to effective treatments • Alignment between regulatory and reimbursement/HTA agencies on evidentiary requirements for sarcoma treatments
• Special regulatory and access pathways for rare cancers
• Involvement of sarcoma patients or their representatives in health technology assessment (HTA) and other access pathways
• Publicly available national and international clinical trial portals listing all ongoing clinical trials in sarcoma