- Very Rare Tumours (VRT) are still an orphan disease in Europe
- A European registry is a step further on the way to ameliorate the care of VRT patients
- Data collection may contribute to optimised consultation of patients with VRTs
- Experts want to increase clinical research and knowledge
- Identification of the VRT entities
- Selection of a core of variables
- Use of common definitions
- Implementation of harmonised procedures for data collection, data quality control and central review
WHICH ARE THE TARGET GROUPS?
The Registry will target patients with VRT, i.e. those with an incidence < 2 per million/children. The registry activities and its link with the virtual consultation system and the elaboration of diagnostic-treatment recommendations will benefit:
- Patients and their families: patients association will benefit from an international network that can give advice that may reduce or even avoid in principle patients/families travelling in search for expert care.
- Paediatric oncology centres with low expertise in VRT: clinicians will benefit from a dedicated platform including data registration, expert clinical advice and clinical recommendations
- National Health care systems: patients will benefit from this European effort because patients will be treated according international standards.
WHICH ADDED VALUE WILL PARTNER BRING IN THE FIELD OF PUBLIC HEALTH?
The strategic value of PARTNER 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 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.
PARTNER 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. Innovation will be embedded in the new platform: innovative IT tools will link the existing databases with the help of the EUPID system assuring interoperability and anonymisation of patients’ data. This may serve as a model for data set integration at the EU level thus paving the way for integration of registries in the near future across the globe. This project 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.