SIOPE and partners making progress in the Joint Action on Rare Cancers (JARC)
Since October 2016, SIOPE has been coordinating activities in Work Package 9 (WP9): Childhood Cancers, part of the Joint Action on Rare Cancers (JARC). We are pleased to share the progress made over the past months towards the objectives of this important project and its principal tasks:
9.1. Formulating recommendations to solve bottlenecks and barriers in accessibility of standard treatments across Europe (essential medicines and radiotherapy)
9.2. Formulating recommendations to increase and facilitate timely access to innovative therapies for children and adolescents with newly diagnosed high-risk and relapsed malignancies
9.3. Formulating solutions to deliver optimal care and research for young people with extremely rare cancers
9.4. Formulating proposals about models of healthcare for survivors of childhood cancers, including long-term follow-up, transition to adult medicine, and the use of the ‘Survivorship Passport’
Regarding Task 9.4 - Survivorship,PanCare, SIOPE, and CCI Europe held a face-to-face meeting with JARC partners on 3 May 2017 in Lund, Sweden. The objective was to set the scene based on the achievements of prior EU projects on this topic, including guidelines for follow-up care and transition to adult settings and tools to improve the quality of life of survivors. Partners will be working to enrich and foster the integration of these deliverables into health policy. A particular orientation includes the integration of the Survivorship Passport into National Cancer Plans across Europe.
Regarding Task 9.2 - Access to innovative therapies, SIOPE,ITCC and CCI Europe convened a meeting on 7 July 2017 in Brussels, Belgium, to develop a first set of preliminary recommendations. Participants included physicians and parents from all countries in the ITCC network and JARC partners. Representatives shared perspectives on the paediatric haemato-oncology sector organisation, early clinical trial activity, and referrals at the national level and across Europe. The meeting resulted in formulating common recommendations for further development in the second phase of the project, which will include non-ITCC country perspectives.
In September 2017, SIOPE hosted two further meetings on Task 9.1 - Access to standard treatment. The Task covers essential medicines, where SIOPE and CCI Europe are partnering with ESMO and ESOP, as well as radiotherapy, where the SIOPEQUARTET programme and cooperation with ESTRO will be instrumental in advancing the project.
Task 9.3 - Very rare tumours is currently finalizing a Report on issues raised by care and research for young people with extremely rare cancers, and a face-to-face meeting is foreseen on 17 November in Frankfurt, Germany.More information about the JARC: