Adrenocortical Tumor, Appendiceal Cancers, Esthesioneuroblastoma, Olfactory, Gastrointestinal Stromal Tumor (GIST), Melanoma and Other Malignant Neoplasms of Skin, Mesothelioma, Nasopharyngeal Carcinoma (NPC), NUT Carcinoma, Pancreatic Tumors, Paraganglioma/ Phaeochromocytoma, Pleuropulmonary Blastoma, Salivary Gland Tumors, Thymic Tumors, Thyroid Carcinoma
Conditions
Keywords
children, rare tumors, very rare tumors, adolescents, PARTNER Study
Brief summary
The PARTNER study is an international, prospective, observational study of paediatric patients with very rare tumours.
Detailed 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.
Interventions
None listed
Sponsors
St. Anna Children's Hospital, Vienna
Children's Hospital Zagreb
Centre Hospitalier Universitaire de La Réunion, FRANCE
Klinikum Dortmund
University Children's Hospital Tuebingen
Hellenic Oncology Research Group
Fondazione IRCCS Istituto Nazionale dei Tumori, Milano
Kaplan Medical Center, Rehovot, Israel
Vilnius University hospital Santaros klinikos, Vilnius, Lithuania
University of Skopje
Gdansk Medical University (Poland)
Centro Hospitalar do Porto
Bucharest Emergency Hospital
Institute for Oncology and Radiology Serbia, Belgrade
University Hospital Bratislava
University Medical Centre Ljubljana
University of Bilbao
Göteborg University
University Hospital, Paris
Azienda Ospedaliera di Padova
Study design
Observational model
OTHER
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Age
0 Years to 18 Years
Healthy volunteers
No
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
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Epidemiology | through study completion, an average of 1 year | Evaluate the number of patients (aged 0-18 years) with different Very Rare Tumors in the different countries: observed cases will be compared with expected cases. |
| Use of International Recommendations | through study completion, an average of 1 year | The study aims to measure the number of patients treated for different neoplasms in different countries, and the proportion of those treated in accordance with the International Recommendations. |
| Survival of children and adolescents (0-18 years) affected by Very Rare Tumors | through study completion, an average of 1 year | The study will correlate the clinical characteristics of the tumor (size, site, extension) with the treatment, the risk of recurrence and survival. |
Countries
Italy
Contacts
Primary ContactGianni Bisogno, MD
Backup ContactMartina Bonel, CRC
Outcome results
None listed