WHAT IS PARTNER?

“THE PARTNER STUDY. AN INTERNATIONAL PROSPECTIVE OBSERVATIONAL STUDY ON PEDIATRIC PATIENTS WITH VERY RARE TUMORS”

This is a Prospective Observational Study, promoted by the EXPeRT Group and coordinated internationally by the Pediatric Oncology Unit of University Hospital of Padua, Italy [AOUP].

It involves the collection of data related to pediatric patients affected by rare tumors. There are very rare tumors (annual incidence of less than 2 cases per 1,000,000 children) that can affect children and adolescents. These neoplasms encompass a wide variety of tumors; some are rare at any age, while others are typical in adults but very rare in children. Due to their rarity, studies so far have been limited and often lack uniform criteria for diagnosis, necessitating more information to improve treatment.

This study aims to collect epidemiological, clinical, biological, radiological, and treatment data from children and adolescents with rare tumors, seeking to understand how clinical and biological characteristics may influence patient survival. No specific treatments are proposed in this study; rather, general data will be collected on the treatments administered in various pediatric oncology centers, particularly regarding whether international guidelines, which exist for some of these rare tumors, are being applied. The data collected will help us assess the value of existing guidelines and develop new ones for tumors that currently lack guidelines or recommendations for diagnosis and treatment.

Due to the extreme rarity of these neoplasms, international collaboration is necessary to gather sufficient data for each different type of tumor, which is why this study will be conducted at the European level. The countries collaborating in the PARTNER study include Austria, Croatia, France, Germany, Greece, Israel, Lithuania, North Macedonia, Poland, Portugal, Romania, Serbia, Slovakia, Slovenia, Spain, and Sweden. The establishment of the data collection platform has been funded by the European Union (Grant Agreement No. 777336). In fact, the PARTNER study is part of the activities of the European Reference Network (ERN) promoted and funded by the European Union. It represents a particularly essential initiative of the European Reference Network for Paediatric Oncology – ERN PaedCan and is the only ERN study coordinated by Italy.

The PARTNER study shares the objectives of the ERN PaedCan and, through data collection, will analyze the quality and uniformity of care processes for rare tumors in pediatric patients, aiming to eliminate the current disparities that exist among different European countries. To participate in the study, each patient will receive information and must sign informed consent.

Updated on December, 19 2024

PARTNER Study Documents – Data Protection Impact Assessment