An International Study on Pediatric Patients With Rare Tumors.
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Простыми словами
Автоматическая сводка по структурированным данным реестра. Она помогает сориентироваться, но не заменяет официальный протокол или оценку врача.
- Что изучают
- Это наблюдательное исследование: исследуемое лечение участникам по протоколу не назначают.
- Кому может быть актуально
- Состояния в реестре: Paraganglioma/ Phaeochromocytoma, Melanoma and Other Malignant Neoplasms of Skin, Gastrointestinal Stromal Tumor (GIST), Adrenocortical Tumor. Базовые параметры: 0 лет — 18 лет · Все.
- Что важно проверить
- Возраст, диагноз и пол — только базовые ориентиры. Предыдущее лечение, анализы и другие обязательные условия указаны ниже в критериях участия.
- Где проводится
- Италия
- Следующий шаг
- Сохраните исследование, покажите его лечащему врачу и уточните актуальный статус у исследовательского центра. Расходы, документы и поездка →
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Официальное название
The PARTNER Study - An International Prospective Observational Study on Pediatric Patients With Very Rare Tumors.
Обзор
The PARTNER study is an international, prospective, observational study of paediatric patients with very rare tumours.
Подробное описание
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.
Первичные конечные точки
- Epidemiology [Срок оценки: through study completion, an average of 1 year]
- Use of International Recommendations [Срок оценки: through study completion, an average of 1 year]
- Survival of children and adolescents (0-18 years) affected by Very Rare Tumors [Срок оценки: through study completion, an average of 1 year]
Критерии участия
Критерии включения
- 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
Критерии исключения
- Absence of Written informed consent from the patient and/or the parent/legal guardian
Критерии приведены из реестра в оригинале (на английском). Окончательную оценку соответствия проводит исследовательский центр.
Здоровые добровольцы: Нет
Дизайн исследования
- Модель наблюдения
- Другое
Центры проведения
Италия · 1 центр
- Pediatric Oncology Unit, University Hospital Padova [AOUP Azienda Ospedale Università Pado — Padova
Публикации
- 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. PMID 33913610
Идентификаторы
NCT: NCT07072143 · The PARTNER study (AOP3417)