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| Name | Class |
|---|---|
| St. Anna Children's Hospital, Vienna | UNKNOWN |
| Children's Hospital Zagreb | OTHER |
| Centre Hospitalier Universitaire de La RĂ©union, FRANCE | UNKNOWN |
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The PARTNER study is an international, prospective, observational study of paediatric patients with very rare tumours.
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.
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| Measure | Description | Time Frame |
|---|---|---|
| Epidemiology | 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. | through study completion, an average of 1 year |
| Use of International Recommendations | 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. | through study completion, an average of 1 year |
| Survival of children and adolescents (0-18 years) affected by Very Rare Tumors | The study will correlate the clinical characteristics of the tumor (size, site, extension) with the treatment, the risk of recurrence and survival. | through study completion, an average of 1 year |
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Inclusion Criteria:
Exclusion Criteria:
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Children and adolescents (0-18 years) with a primary or relapsed Very Rare Tumor (VRT)
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Gianni Bisogno, MD | Contact | 0039 0498211481 | gianni.bisogno@unipd.it | |
| Martina Bonel, CRC | Contact | 0039 04908211481 | martina.bonel@unipd.it |
| Name | Affiliation | Role |
|---|---|---|
| Gianni Bisogno, MD | Azienda Ospedale UniversitĂ Padova - Italy | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Pediatric Oncology Unit, University Hospital Padova [AOUP Azienda Ospedale UniversitĂ Padova] | Recruiting | Padova | Italy | 35127 | Italy |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 33913610 | Background | Orbach D, Ferrari A, Schneider DT, Reguerre Y, Godzinski J, Bien E, Stachowicz-Stencel T, Surun A, Almaraz RL, Dragomir M, Jani D, Ami TB, Roganovic J, Brecht IB, Ladenstein R, Bisogno G. The European Paediatric Rare Tumours Network - European Registry (PARTNER) project for very rare tumors in children. Pediatr Blood Cancer. 2021 Jun;68 Suppl 4:e29072. doi: 10.1002/pbc.29072. Epub 2021 Apr 29. |
| Label | URL |
|---|---|
| The page describes the PARTNER project inside the website of SIOP Europe (the European Society for Paediatric Oncology) | View source |
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| Klinikum Dortmund |
| UNKNOWN |
| University Children's Hospital Tuebingen | OTHER |
| Hellenic Oncology Research Group | OTHER |
| Fondazione IRCCS Istituto Nazionale dei Tumori, Milano | OTHER |
| Kaplan Medical Center, Rehovot, Israel | UNKNOWN |
| Vilnius University Hospital Santaros Klinikos | OTHER |
| University of Skopje | OTHER |
| Gdansk Medical University (Poland) | UNKNOWN |
| Centro Hospitalar do Porto | OTHER |
| Bucharest Emergency Hospital | OTHER |
| Institute for Oncology and Radiology Serbia, Belgrade | UNKNOWN |
| University Hospital Bratislava | OTHER |
| University Medical Centre Ljubljana | OTHER |
| University of Bilbao | UNKNOWN |
| Göteborg University | OTHER |
| University Hospital, Paris | OTHER |
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| ID | Term |
|---|---|
| D008545 | Melanoma |
| D046152 | Gastrointestinal Stromal Tumors |
| D000306 | Adrenal Cortex Neoplasms |
| D010190 | Pancreatic Neoplasms |
| D018304 | Esthesioneuroblastoma, Olfactory |
| D008654 | Mesothelioma |
| D000077274 | Nasopharyngeal Carcinoma |
| C537516 | Pleuropulmonary blastoma |
| D013953 | Thymus Neoplasms |
| D013964 | Thyroid Neoplasms |
| ID | Term |
|---|---|
| D018358 | Neuroendocrine Tumors |
| D017599 | Neuroectodermal Tumors |
| D009373 | Neoplasms, Germ Cell and Embryonal |
| D009370 | Neoplasms by Histologic Type |
| D009369 | Neoplasms |
| D009380 | Neoplasms, Nerve Tissue |
| D018326 | Nevi and Melanomas |
| D012878 | Skin Neoplasms |
| D009371 | Neoplasms by Site |
| D012871 | Skin Diseases |
| D017437 | Skin and Connective Tissue Diseases |
| D009372 | Neoplasms, Connective Tissue |
| D018204 | Neoplasms, Connective and Soft Tissue |
| D005770 | Gastrointestinal Neoplasms |
| D004067 | Digestive System Neoplasms |
| D004066 | Digestive System Diseases |
| D005767 | Gastrointestinal Diseases |
| D000310 | Adrenal Gland Neoplasms |
| D004701 | Endocrine Gland Neoplasms |
| D000303 | Adrenal Cortex Diseases |
| D000307 | Adrenal Gland Diseases |
| D004700 | Endocrine System Diseases |
| D010182 | Pancreatic Diseases |
| D009447 | Neuroblastoma |
| D018241 | Neuroectodermal Tumors, Primitive, Peripheral |
| D018242 | Neuroectodermal Tumors, Primitive |
| D018302 | Neoplasms, Neuroepithelial |
| D009375 | Neoplasms, Glandular and Epithelial |
| D020431 | Olfactory Nerve Diseases |
| D003389 | Cranial Nerve Diseases |
| D009422 | Nervous System Diseases |
| D000236 | Adenoma |
| D018301 | Neoplasms, Mesothelial |
| D002277 | Carcinoma |
| D009303 | Nasopharyngeal Neoplasms |
| D010610 | Pharyngeal Neoplasms |
| D010039 | Otorhinolaryngologic Neoplasms |
| D006258 | Head and Neck Neoplasms |
| D009302 | Nasopharyngeal Diseases |
| D010608 | Pharyngeal Diseases |
| D009057 | Stomatognathic Diseases |
| D010038 | Otorhinolaryngologic Diseases |
| D013899 | Thoracic Neoplasms |
| D008206 | Lymphatic Diseases |
| D006425 | Hemic and Lymphatic Diseases |
| D013959 | Thyroid Diseases |
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