PROJECTS & EVENTS UPDATE: ERN-PAEDCAN Partner: Paediatric Rare Tumours Network – European Registry

The PARTNER Project is part of the European Reference Network for Paediatric Cancer (ERN PaedCan).  It is a 3-year project that involves 6 research centres as Associated partners, located in various European countries (Italy, Austria, Germany, France and Poland) and 18 Collaborating partners (6 EU countries, 2 non-EU countries, 9 LHEAR countries and 1 parent organization).   The project will create a Paediatric Rare Tumour Europe Registry dedicated to children and adolescents with very rare tumours (VRT) and link existing national registries providing a registry for those countries not already having a registry for VRT in place.  A European registry is a step further to ameliorate the care of VRT patients.  Very Rare Tumours are still considered as orphan disease in Europe.

The strategic value of PARTNER in the field of public health is based on the European wide gathering of information on treatment of VRT and the provision of this information to experts generating new guidance recommendations for daily practice for use by ERN and non-ERN Institutions. The collection of data will contribute to optimized consultation of patients with VRTs.  Consequently, experts will increase clinical research and knowledge.

The proposed tasks and milestones will increase the collaboration amongst member states in paediatric oncology and will be able to include also LHEAR (Low Health Expenditure Average Rate) countries in the process. This project will result in a platform for VRT that could represent a model for a comprehensive approach (case registration, international case consultation and treatment recommendations, website to give parents/patients information) in the field of rare diseases.

The PARTNER project will establish a registry linked with a virtual consultation system that will increase the capability of acquiring further significant knowledge and give expert advice to clinicians. According to the strategy of the EU cross border directive, this project will promote the “travelling” of knowledge and expertise across Europe.

The PARTNER Project also builds upon work and actions from the EU-funded ENCCA and ExPO-r-Net projects. The information collected and tools developed will be disseminated to key stakeholders (other ERNs, European Clinical Trials Groups, parents and patients) to enhance further collaborations.

The target group includes patients and their families, paediatric oncology centres with low expertise in VRT and national healthcare systems.

Concretely, the expected outcomes include:

  • 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 reducing inequalities in cancer outcome across EU Member States

 

The PARTNER project kick-off meeting took place on 2 February 2018 in Brussels where a total of 40 participants took part.

SIOP Europe is the dissemination partner for this project.  More information about the PARTNER Project is accessible on the project website and photos from the Brussels and Luxembourg (17 April) meetings are also available.

 

 

 

 

 

 

More information: https://www.raretumors-children.eu/about-us/partner-project/

Next meeting: 14 September 2018, Gdansk, Poland

Twitter: #PARTNERproject