SIOPEN BIOPORTAL and its relation to Survivorship Passport and European Joint Programme on Rare Diseases

Description

SIOPEN (International Society of PediatricOncology Europe Neuroblastoma Group) have the aim to improve the survival ofchildren with neuroblastoma – a tumor that arises from immature nerve cells.

(source: https://ccri.at/executive-board-of-europes-neuroblastoma-network-siopen/) 

The SIOPEN BIOPORTAL is a prospective non-therapeutic multicenterinternational study with the aim of developing an international registry linkedto a virtual biobank for all patients with peripheral neuroblastic tumors inthe countries of the SIOPEN network.

(source: https://ichgcp.net/de/clinical-trials-registry/NCT05192980)

The Survivorship Passport(SurPass) is a tool to provide all European childhood cancer survivors withoptimal long-term care. It provides instant access to the medical history ofpatients who ended a cancer therapy, making survivors and healthcareprofessionals aware of the potential risks or late effects stemming from theprevious disease and treatment received. (source: https://siope.eu/activities/joint-projects/survivorship-passport/)

The EuropeanJoint Programme on Rare Diseases (EJP RD) is a programme aiming tocreate an effective rare diseases research ecosystem for progress, innovationand for the benefit of everyone with a rare disease. We support rare diseasesstakeholders by funding research, bringing together data resources & tools,providing dedicated training courses, and translating high quality researchinto effective treatments.

(source: https://www.ejprarediseases.org/)