Overview
The PARTNER study is an international, prospective, observational study of paediatric patients with very rare tumours.
Description
There are some very rare tumors (with an annual incidence of less than two per million children) that can affect children and adolescents. These neoplasms include a wide variety of cancers; some are rare at any age, while others are typical of adults but very rare in children. Due to their rarity, studies have so far been scarce, often lacking univocal diagnostic criteria, and more information is needed to improve treatment outcomes.
The aim of this study is to collect epidemiological, clinical, biological, radiological and treatment data on children and adolescents with rare cancers in order to improve our understanding of these tumors and how their clinical and biological characteristics affect treatment outcomes.
Due to the rarity of these malignancies, international collaboration is necessary to collect sufficient data on each tumour type.
While the investigators are not proposing specific treatments, the data collected will inform recommendations for the diagnosis and treatment of patients.
The PARTNER Study is an observational, prospective study. It is sponsored by Padua University Hospital AOUP (Italy), and all European centres collaborating with the EXPeRT group have been invited to participate. It is a non-profit study, meaning it has no commercial purpose, only the aim of improving knowledge and treatment for children with rare cancers. PARTNER activities are supported in different countries by national funds, as well as by the European Commission through the European Reference Network for Paediatric Oncology (ERN PaedCan). Please visit https://paedcan.ern-net.eu/ for more information.
Eligibility
Inclusion Criteria:
- Children and adolescents (age 0-18 years) with a primary or relapsed Very Rare Tumor diagnosed and/or treated in a participating country/center.
- Written informed consent from the patient and/or the parent/legal guardian
Exclusion Criteria:
- Absence of Written informed consent from the patient and/or the parent/legal guardian