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 |