PanCare

EU Legislative Interests

PanCare aims to improve quality of life after survival of childhood and adolescent cancer. The main focus of PanCare on EU policies and programmes are in the field of Health, as well as Research, Science and Innovation. Thus, PanCare engages in ‘oncopolicy’: a planned and sustained interaction with EU policy-makers and other stakeholders to anticipate and proactively shape EU health and research policies on childhood cancer survivorship issues. Areas of EU Health and Research of particular interest to PanCare are Cancer; Rare Cancers; Rare Diseases; Cancer Information Systems; Access to Healthcare; Access to Medicines; Innovative Treatments; Essential medicines, Quality of (Health)Care; European Reference Networks. Specific legislative and related implementation acts that PanCare follows include: Europe’s Beating Cancer Plan, HorizonEurope, Health Programme & EU4Health, Europe’s Pharmaceutical Strategy, Paediatric Regulation, Orphan Regulation, follow-up to Joint Actions on Rare Cancers (JARC) as well as CanCon Joint Action and EPAAC Joint Action, Cross-Border Healthcare Directive, Innovative Medicines Initiative, etc.

Communication Activities

EU-funded research projects and synergies with EU-funded networks: PanCare projects: PanCare Childhood and Adolescent Cancer Survivor Care and Follow-Up Studies (PanCareSurFup, FP7- funded): research studies into late effects of treatment for cancer, established guidelines for follow-up, and disseminated the results and provided training and workshops for stakeholders. PanCare Studies in Fertility and Ototoxicity to Improve Quality of Life after Cancer during Childhood, Adolescence and Young Adulthood (PanCareLIFE, FP7-funded): PanCareLIFE was a 5-year (2013-8) EU Framework 7 Programme in the Health Theme that studied the impact of treatment regimes on the long-term health of childhood cancer survivors. Specifically impairments in female fertility, in hearing, and in quality of life. PanCareFollowUp: Novel, patient-centred survivorship care to improve care quality, effectiveness, cost-effectiveness and accessibility for survivors and caregivers (PanCareFollowUp, EU-horizon 2020 funded): PanCareFollowUp is an EU-funded project looking at how to best deliver survivorship care to survivors of childhood and adolescent cancer in Europe. PanCare studies of the scale-up and implementation of the digital Survivorship Passport to improve person-centred care for childhood cancer survivors (PanCareSurPass, EU-Horizon 2020 funded): PanCareSurPass is an EU-funded project looking at how to more widely implement the digital Survivorship Passport (SurPass) to improve survivorship care for survivors of childhood and adolescent cancer in Europe. PanCare4AYA (Horizon - 2025 funded) PanCare4AYA will develop an international clinical guideline for screening and follow-up of late effects of Adolescent and Young Adult (AYA) cancer, which will be implemented via a novel person-centred screening programme (AYA Cancer Survivor Screen). PanCare partner projects EU Joint Action on Rare Cancers (JARC, EU Health-funded, SIOP-E, CCI Europe, PanCare): UNICA4EU (European Union’s Call for Pilot Projects and Preparatory Actions (PPPA), SIOPE): map the current landscape of Artificial Intelligence (AI) applications for Childhood Cancer to understand how AI can help improve care pathways in the EU EU-CAYAS-NET (EU4Health, partner): European Network of Youth Cancer Survivors to map the existing resources that are helpful to young cancer patients, survivors and their caregivers, to create new European guidelines and empower cancer survivors to advocate for their rights and needs SmartCARE (EU4Health, partner) WP-lead. smartCARE is developing a ‘Cancer Survivor Smart Card’. This digital tool decreases the communication gap between survivors and health and social-care providers e-Quol (Horizon, partner) e-QuoL is aims at providing children, adolescents and young adults who have survived cancer with e-health tools designed specifically for and with them to help them manage their health. YARN (EU4Health - co-funded) The European Youth Cancer Network (YARN) weaves together & builds on the EU-CAYAS-NET and OACCUs projects to expand the EU Network of Young People Affected by Cancer, focusing on peer support, social networking, and digital tools to improve access to information. PanCare will extend the PLAIN language information. UNIFIED (IHI JU - funded) The mission of UNIFIED is to develop a harmonised and internationally aligned framework that integrates patient preferences, clinical outcome assessments, and digital health technology derived measures into clinical research, regulatory review, and health technology assessment. IMPACT-EU (EU4Health - co-funded) IMprove Psychosocial cAre and soCial supporT for children and adolescents with cancer and their families to improve quality of life for all. MPACT-EU aims to improve psychosocial care for children with cancer and their families across Europe. Our goal is to ensure that every child and family receives high-quality, evidence-based psychosocial support, regardless of where they live.

Interests Represented

Does not represent commercial interests

Member Of

https://www.pancare.eu/partners/

Organisation Members

Only natural persons can be a member, so no organisations are members