ERN PaedCan and its members offers a series of educational activities for Patients. Below you can find the upcoming Webinars as well as the recording of the past ones.
Webinars
Date
Title
Speaker
Speaker profile
Expert
Slides
Recording
Event Report
Registration
2021
Synchronous tumours: the chemotherapy challenge for the modern oncologist
The ESCP Project is an on-going collaboration between ERN PaedCan and SIOP Europe’s Clinical Trial Groups (ECTG), aiming to develop approved clinical recommendations that reflect current best practices for each common childhood cancer type. The goal is to improve outcomes and increase childhood cancer survival, and quality of life by providing these benchmarks for best practice.
The ESCP Project is collating treatment pathways that reflect current best standards of care, defined by the collective European experts in each field. These expert-endorsed recommendations aim to improve access to best standard treatments for all children with cancer throughout Europe and hold the potential of reducing inequalities in childhood cancer outcomes across Member States. The intended use of these documents is to provide a written recommendation for best standard treatments and can be used as a benchmark where no national recommendations or clinical trial options are available.
Each of the ESCPs Guideline is written by the corresponding ECTG and revised and approved by the SIOPE Board.
Subsequent protocols provide important information to paediatric haemato-oncologists, patients, and families in situations where current standard best clinical practice is either unavailable or front-line trials are not accessible.
To help us understand the availability of recommended treatments and diagnostics throughout Europe, we encourage you to complete one of the surveys after you have consulted an ESCP. Two versions of each survey are available: one directed at National Paediatric Haemato-Oncology Societies (NaPHOS) and one targeting CCI-E (the European branch of Childhood Cancer International) member states and ERN PaedCan national contact points from the patient side (i.e. Parents, Survivors, Carers) who should be able to understand the guidance documents in order to be able to support families.
The following ESCP Guidance Documents are accessible below:
ESCP registry
Where front-line clinical trials are not open or accessible, these ESCP Guidelines provide an important benchmark of acknowledged treatment standards to paediatric haemato-oncologists, patients, and families and governmental bodies.
The ESCP registry has been approved by the ethics commission in Austria and is in the process of being implemented throughout the ERN PaedCan Members and Affiliated Partners.
ESCP Guidelines
Main Category
Tumour type
ESCP Protocol
Survey – Healthcare Professionals (NaPhos)
Survey – Patients and Families (CCI-E)
Other Key Words (search items)
Relevant Scientific Publication
ADRENAL Gland Tumour
Adrenocortical Tumours in Children and Adolescents
Pineoblastoma, Pineocytoma, Pineal parenchymal tumour of intermediate differentiation (PPTID), Papillary tumour of the pineal region (PTPR), Desmoplastic myxoid tumour, SMARCB1-mutant
ESCP Webinar – Ophthalmological Assessment in Children with a Brain Tumor Thu, Sept 28, 2023 5:00 PM – 6:00 PM CEST Mentor: Giorgio Porro and Enrico Opocher Young SIOPE: Carlien Bennebroek Webinar ID: 320-387-435
ESCP Webinar – Adrenocortical Tumours Thu, Jan 19, 2023 5:00 PM – 6:00 PM CET Mentor: Calogero Virgone Young SIOPE: Marta Martos Rodriguez and Paraskevi Panagopolou Event Slides Event Recording
ESCP Webinar – Pleuropulmonary Blastoma Thu, Feb 16, 2023 5:00 PM – 6:00 PM CET Mentor: Gianni Bisogno Young SIOPE: Arianna Tagrelli and Maria Kourti Event Slides Event Recording
ESCP Webinar – Non-Hodgkin Lymphoma Thu, Mar 23, 2023 5:00 PM – 6:00 PM CEST Mentor: Andishe Attarbaschi Young SIOPE: Vasiliki Tzotzola and Paula Perez Event Slides Event Recording
ESCP Webinar – Langerhans Cell Histiocytosis Thu, Apr 20, 2023 5:00 PM – 6:00 PM CEST Mentor: Milen Minkov Young SIOPE: Karel Svojgr Event Slides Event Recording
2022
ESCP Webinar – Medulloblastoma Thu, Dec 15, 2022 5:00 PM – 6:00 PM CET Mentor: Simon Bailey Young SIOPE: Sandra Jacobs, Ines Alves Event Slides Webinar recording
ESCP Webinar – High-Grade Glioma with EZHIP overexpression 30 November 2022, 17.30 CET/16.30 GMT Presenter: Katerina Vanova (CZ) Expert: Stefan Pfister (DE) Speaker profiles Webinar recording Webinar slides
ESCP Webinar – Nasopharyngeal Carcinoma Thu, Nov 17, 2022 5:00 PM – 6:00 PM CET Mentor: Tal Ben-Ami Young SIOPE: Tristan Römer Event Slides Webinar recording
ESCP Webinar – Acute Lymphoblastic Leukemia Tue, Jun 14, 2022 5:00 PM – 6:00 PM CEST Mentor: Carmelo Rizzari, Tomasz Szczepanski Young SIOPE: Giacomo Gotti, Mirella Ampatzidou and Janine Stutterheim Event slides Webinar recording
ALK MUTATIONS IN INFANTILE HEMISPHERIC GLIOMA: TARGETING THE FUTURE 19 October 2022, 17.30 CET/16.30 GMT Presenter: Ana Izurieta (ES) Expert: Veronica Biassoni Speaker profiles Webinar recording Webinar slides
PRECOCIOUS PUBERTY AND ADRENAL MASS IN AN INFANT WITH FAMILY HISTORY OF EARLY-ONSET CANCER. WHAT´S THE DIAGNOSIS AND WHAT´S NEXT 14 September 2022, 17.30 CET/16.30 GMT Presenter: Maria Pérez-Torres Lobato (ES) Expert: Christian Kratz (DE) Speaker profiles Webinar recording Webinar slides
ADRENOCORTICAL CARCINOMA WITH BRAIN METASTASES IN A CHILD WITH BECKWITH-WIEDEMANN SYNDROME 18 May 2022, 17.30 CET/16.30 GMT Presenter: Anna Campello (IT) Expert: Marjolijn Jongmans (NL) Speaker profiles Webinar recording Webinar slides
MEDIASTINAL MASS: WHAT TO DO WHEN BENIGN TUMOURS CAN BE LIFE-THREATENING? 16 March 2022, 17.30 CET/16.30 GMT Presenter: Vasiliki Ganosi (UK) Expert: Andishe Attarbaschi (AT) Speaker profiles Webinar recording Webinar slides
SECOND, PECULIAR RECURRENCE OF A WILMS TUMOR: PLEURAL AND LATE 16 February 2022, 17.30 CET/16.30 GMT Presenter: Andrada Turcas (BE) Expert: Norbert Graf (DE) Speaker profiles Webinar recording Webinar slides
TREATMENT CONUNDRUM IN A RARE DIAGNOSIS: RESECT AND IRRADIATE, IS THAT ENOUGH? Presenter: Shermaine Pan (UK) Expert: Emanuela Palmerini (Italy) Speaker profiles Webinar recording Download Slides
SUCCESS STORY OF A RELAPSING ALVEOLAR RHABDOMYOSARCOMA: IMPORTANCE OF COMPLETE LOCAL TREATMENT! Presenter: Morgane Cleirec (France) Expert: Hans Merks (Netherlands) Speaker profiles Webinar recording Download Slides
[UPDATE/CHANGED TOPIC] CHILDHOOD CANCER PREDISPOSITION Presenter: Prof. Christian Kratz Speaker profile This webinar contained unpublished data and is therefore not available for online viewing.
Membership applications can only be submitted in response to official calls launched by the European Commission for new members to join the existing ERNs. Currently, there are no open calls for new ERN PaedCan members. To learn more about the application process once a call is announced, you can refer to:
If you would like to be notified when a new call is published, please contact us at: ernpaedcan@ccri.at
Training and Twinning programme
The aim of the ERN PaedCan Training/Twinning Programme is to share knowledge and to stimulate collaboration between healthcare professionals’ members of ERN PaedCan.
ERN PaedCan Success Stories Testimonial Video
The objective of the Training/Twinning Programme is to reduce disparities in specific knowledge or gaps in expertise by facilitating the arrival of high-level expertise in paediatric oncology to health care professionals in widening countries.
Specific priorities that ERNPaedCan address, are:
On-site training of paediatric oncologists, radiotherapists, surgeons in short-term stays of up to 2 weeks.
Leading clinicians to learn specific methodologies with a particular focus on diagnostics, biomarkers and liquid biopsies.
Criteria for selecting individuals for exchange visits
Health care professionals employed in ERN PaedCan members Institutions in widening countries. Countries meeting the criteria: Bulgaria, Croatia, Cyprus, Czech Republic, Estonia, Greece, Hungary, Latvia, Lithuania, Malta, Poland, Portugal, Romania, Slovakia, Slovenia.
There are currently no open calls for the Training and Twinning programme. Stay tuned for the next call to be open in 2026.
Monitoring
Continuous Monitoring of ERNs
The Continuous Monitoring of ERNs, a process established in 2018 by the Member States, ERNs and European Commission, aims at evaluating the performance of ERNs and ensuring they are working towards their goal. Each year, all Full Members and Affiliated Partners of ERN PaedCan are required to participate in the Continuous Monitoring exercise that takes place the first from January to March.
What to Expect
The Continuous Monitoring exercise is composed of two main steps:
step 1: EC MONITORING PLATFORM
Indicators: Number of new patients and use of Orphacodes.
All indicators were defined by the Monitoring Working Group. In this document you can consult the complete list of indicators and their definitions.
Detailed Information
Detailed Information on step 1
Each HCP has designated a reporter to submit the data to the European Commission – DG SANTE Data Collection Platform
Reporter uses EU login with 2-factor authentication to access the platform
IMPORTANT: The designated reporter is the only user with access to the platform! Request change of report via email.
Reporter access the SANTE Data Collection platform.
Give details on two indicators:
Total number of new paediatric oncology patients in the reporting period.
Definition: Number of new patients referred to your clinical centre, with the diagnosis of a disease or condition that falls within the scope of ERN PaedCan. This refers to the total number of new paediatric patients attending your hospital for the first time in 2024, including visits to outpatient clinics, hospital discharges and emergencies, coming from both national and international referrals, whose disease/condition falls within the codes listed by the ERN PaedCan (i.e. whose disease condition falls within those categories, what you have indicated in your ERN PaedCan membership application).
Use of ORPHAcodes to classify peadiatric oncology patients
The European Commission (EC) has introduced, in the current European Reference Networks (ERNs) grant, a set of indicators for all obligatory Work Packages.
The aim of the ERN PaedCan Members Activity Overview is to measure and document the participation and contribution of the members to all core activities of the network, to identify areas of opportunities for members to be more active in the network.
The ERN PaedCan Members Activity Overview consists of 10 activities that are monitored for each of the members of the network. Each activity was assigned a score based on effort and time investment, as fair as possible.
ORPHAcodes
ERN PaedCan, in collaboration with SIOPE and Orphanet, is working to develop harmonized ORPHAcodes for paediatric cancer.
Why are ORPHAcodes important for paediatric cancer?
Interoperability: enable alignment across different coding systems. They are cross-referenced with major international terminologies and databases, including OMIM, ICD-10, ICD-11, SNOMED-CT, MedDRA, UMLS, MeSH, and GARD.
Integration of molecular subtypes: ORPHAcodes will include molecular genetic aspects in subgroups for all entities, reflecting the latest classifications in paediatric oncology.
Economic implications: ORPHAcodes are expected to become part of national reimbursement systems for rare disease care across EU Member States—including paediatric cancer.
Visibility of childhood cancer as a rare disease: ORPHAcodes support improved tracking of paediatric cancer cases at the EU level, reinforcing its visibility as a rare disease area—often linked to policy decisions and funding decisions.
All ESCP authors—mentors and mentees—were invited to participate in this exciting project.
The project to develop ORPHAcodes for paediatric cancer started in October 2024 and is still under development.
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