WHAT IS PARTNER?
PARTNER (ERN-PAEDCAN Partner: Paediatric Rare Tumours Network – PARTNER) is a 48 months 3rd Health Programme funded project running from January 2018 to December 2021. The project is a collaboration between 6 associated partners from Italy, Austria, Germany, France and Poland and 23 collaborating stakeholders. PARTNER focuses on the creation of a Paediatric Rare Tumour European Registry dedicated to children and adolescents with VRT (Very Rare Tumours) linking the existing national registries and providing a registry for those countries not already having a registry for VRT in place.
EXPECTED OUTCOMES
- Creating a comprehensive EU platform dedicated to the improvement of care for children and adolescents with VRT
- Harmonising data in the existing national registries in collaboration with the JRC registry platform
- Linking the EU registry with a virtual consultation system
- Providing a registry for those countries that do not already have a registry for VRT in place
- Enabling detailed diagnostic/treatment recommendation that can be easily accessed by EU healthcare providers
- Increasing the capacity to provide international consultation and foster access to expert diagnosis, and treatment improving the chances of cure for children with VRT across Europe
- Improving care for patients and reduce inequalities in cancer outcome across EU Member States
