The mission of the European Reference Network on Paediatric Cancer (ERN-PAEDCAN) is to improve outcomes of childhood cancer and malignant haematological diseases by reducing the current inequalities in different member states. Comparative population-based cancer registry research has provided robust evidence for significant inequalities in survival from childhood cancer across Europe: the difference may be as much as 30% units, with worse outcomes in Eastern Europe. Despite a reduction in the geographical differences in the period 2005–09, the former socialist economies still have roughly 20% excess mortality from cancer in children compared with the rest of Europe. The PaedCan ERN aims to provide paramount requirements for ‘Cross-border healthcare’ allowing the provision of healthcare to children with cancer in a Member State other than the Member State of affiliation. We identify target groups with conditions requiring a particular concentration of resources or expertise, especially when the expertise with certain cancer conditions is rare and case volume low. Taking into account the potential burden on families seeking cross border health care ERN-PAEDCAN intends to establish mechanisms to facilitate movement of information and knowledge rather than patients. We aim to extend local and national ‘tumour board’ culture to the cross border level with identified and required ICT tools and eHealth networks. High-quality, accessible and cost-effective healthcare for childhood cancer are achieved by strengthening the integration of pre-existing knowledge and expertise, and fostering stronger cooperation between patients, professionals and healthcare authorities. The innovative contribution of ERN-PAEDCAN is a clear roadmap to approved expert referral sites and tumour advisory boards for healthcare providers fulfilling our vision of a more supportive environment for children with cancer with special needs by integrating pre-existing networks and knowledge across borders.
Paediatric cancer is rare affecting one in approximately 500 children (National Cancer Institute, http://www.cancer.gov/types/childhood-cancers/child-adolescent-cancers-fact-sheet#q2). However, childhood cancer remains the leading cause of death from disease beyond one year of age with 20,000 children (0-18 years) newly diagnosed with cancer across Europe and 6,000 paediatric cancer patients dying from their disease each year. Although survival rates for most childhood cancers have generally improved in recent decades, the improvement has been dramatic for a few specific cancers, while for other cancer types survival rates remain very low (i.e. diffuse intrinsic pontine glioma, other high-risk central nervous system cancers, high-risk soft tissue sarcoma, high-risk neuroblastoma).
If a child survives childhood cancer also depends on the specific age, the risk groups and on certain locations. Multiple clinically and/or biologically defined subtypes require extremely specialised diagnostics and treatment, which is only available in specialised centers. Hence childhood cancer remains a major public health issue and a huge clinical challenge in Europe (Vassal et al. Pediatr Blood Cancer 2014) despite its rarity.
As highlighted by the priorities established by the specific objective 4 of the Third Health Programme, the European Reference Network for Paediatric Cancer (ERN-PAEDCAN) will increase access to medical expertise and facilitate information sharing for specific/rare conditions beyond national borders. The goal of the ERN-PAEDCAN is to improve outcomes of childhood cancer by reducing the current inequalities in different member states. The main objective of the ERN-PAEDCAN is to provide cross-border best care to rare childhood cancer populations through linking pre-existing reference centres inherent to the established European Clinical Trial Groups (trial groups coordinating treatment in participating centers independent from industry), which will contribute to high-level diagnostic and medical expertise.
Following the Commission Implementing Decision (2014/287/EU) and the Directive 2011/24/EU article 12, 2 (h), the ERN-PAEDCAN aims to increase childhood cancer survival and quality of life by fostering cooperation, research and training with the ultimate goal to reduce current inequalities in childhood cancer survival and healthcare capabilities in different member states. Improvement of quality of life and gaps across the care continuum including transition from childhood care to adult care are tackled by a specific follow-up programme for cancer survivors, namely the Survivorship Passport, developed during previous projects (FP7-projects ENCCA, PanCare, and the CHAFEA-funded project ExPO-r-Net).
To ensure high quality cross-border treatment for children and adolescents the ERN-PAEDCAN is creating a common roadmap through interlinking cancer specific sub-networks and creating transparency in the paediatric cancer healthcare arena by highlighting expert sites available for cross-border expert advice and patient’s referrals eventually.
The Childhood Cancer Roadmap shall be used by healthcare professionals as a reference document, outlining principle treatment strategies, recommendations and national contact points.
This roadmap for public healthcare providers and patients will increase the visibility of acknowledged reference sites based on the fulfilment of the standards of care requirements and on the provision of special diagnostic and treatment interventions. This roadmap is instrumental in cross-border healthcare challenges and contributes to the basis of criteria established under Directive 2011/24/EU, namely supporting the establishment of a system of European reference networks for patients with conditions requiring highly specialised care and a particular concentration of resources or expertise, as in the case of rare diseases.
To optimise accessibility of expert advice in the cross-border healthcare setting, a paediatric tumour board network is being implemented using the Clinical Patient Management System (CPMS). The System allows discussions among healthcare professionals across Europe. Medical healthcare professionals are therefore able to receive advice on very rare cases and exchange knowledge with colleagues working in different countries. LHEAR country members are also here the ones that benefit most of the virtual exchange platform.
Similarly, the treatment and quality of care in LHEAR countries will be sustainably enhanced by linking ERN-PAEDCAN specialist sites with identified LHEAR country healthcare providers. The aim of the Twinning Programme is for LHEAR country healthcare professionals to receive training and enhance knowledge through the exchange of staff and other training programmes.
The ERN PAEDCAN was inaugurated in Vilnius, March 9-10, 2017 at the 3rd ERN Conference as one of 24 European Reference Networks. The official Kick-Off Meeting of the ERN-PAEDCAN was held in Brussels 29-30 June, 2017 in presence of five high levels EU commissioners and an audience of about 100 engaged Paediatric Haemato-Oncologist.
During the first year of the networks´ implementation various actions as outlined in the Specific Grant Agreement were carried forward:
To ensure quality throughout the five years of implementation of the network, the ERN PAEDCAN Steering Committee established a Quality Assurance Plan (QAP). The plan outlines internal working and quality procedures and facilitates the work with work package leaders and contributors. A Dissemination and Communication Plan was developed, establishing the basis of dissemination activities in the first year of implementation. As outlined in Work Package two of the first year implementation of the Specific Grant Agreement, two sub-networks contributed to the enlargement of the roadmap document. The Parents´ and Patients´ Survivor Organisations (CCI-E) as well as the Langerhans Cell Histiocytosis (LCH) sub-network created a guidance document which was integrated in the overall roadmap. Taking into account that already in year 1 of ERN-PAEDCAN more than 25% of its members are from countries with low health expenditure rate, the contribution to the fight of reducing healthcare inequalities across Europe is immediately addressed.
Supporting the roadmap creation and enhance best practice sharing, a best practice meeting in Neuro-oncology was held. The meeting was the starting point to develop best practice guidelines and initiate the roadmap work on the sub-network document in the specific brain tumour entity.
Various activities were carried out to actively enhance sharing of knowledge of healthcare providers. In the overall project plan, it is foreseen to develop an IT tool for discussion of patients across Europe and optimise accessibility of advice in a cross-border healthcare setting. The European Commission provided all ERNs with the Clinical Patient Management System (CPMS) which was tested at the end of the first year. The Network Management Team supported and encouraged all ERN-PAEDCAN members to sign up for the Clinical Patient Management System (CPMS) and test it for its use in the paediatric community.
Secondly, a Twinning Programme with one major healthcare provider in a Low Health Expenditure Rate (LHEAR) country was established with the aim of improving the quality of care and treatment by linking an ERN-PAEDCAN member with an identified coordinating healthcare provider in a LHEAR country. A fellowship plan summarizing all necessary administrative procedures was accomplished. The latter will facilitate an easy process in the upcoming years of twinning programme implementation.
To improve E-Training and the quality and reach out of e-training opportunities towards LHEAR countries one awareness movie on the early diagnosis of retinoblastoma was adapted for the ERN PaedCan use and can be accessed on the ERN-PAEDCAN website. Capacity building was specifically enforced through the production of a webinar on state of the art diagnosis and treatment of retinoblastoma for countries with less expertise and resources.
To ensure knowledge sharing and dissemination of ERN-PAEDCAN activities among partners, parents and survivor and other key stakeholders a General Assembly (GA) meeting was held in February 2018.
As objective 1 of the SGA Annex 1, the developed Quality Assurance Plan (QAP) and internal evaluation report show proof-of-concept and will function as a basis for future reports on the performance of the network. Network partners were able to develop activities based on quality standards as outlined in the QAP.
To create the parents and survivors´ organisations sub-network roadmap as described above, firstly national parents and patient groups were identified. This brought immediate impact, as the national groups were informed about the network and its benefits. In addition, a survey with parents and patients national groups was conducted and needs of parents and patients groups successfully identified. Another sub-network specific roadmap was developed in year one on Langerhans Cell Histiocytosis (LCH) displaying current state of the art treatment and referral mechanisms for paediatric oncology specialists in this area.
Through the organisation of the best practice meeting in Neurooncology participants (experts in each specific area of Neurooncology and parents and patients groups’ representation in the field of Neurooncology) gained general knowledge on the ERN-PAEDCAN and the roadmap development. Through the interactivity among all participants an assessment of needs was undertaken. Attendees acquired knowledge of current standards of care in various treatment areas (from Neuroradiology, to MDT and general aspects) which will be further discussed with parents and patients to quickly develop best practice guidelines. Additionally, key situations for patients and sample referrals within ERN-PAEDCAN were discussed.
Various Healthcare providers with fundamental experiences were identified and chosen in the trial period to give feedback loops and help to enhance the Clinical Patient Management System (CPMS).
In the pilot period, advice to other healthcare professionals about specific cases was successfully given and in February 2018, 6 patients were already enrolled in the first year and advice given for treatments accordingly to best expertise available in Europe.
The output of the twinning programme was more than successful. The paediatric oncologist from Sofia (identified LHEAR country) that received Observership training in year 1 was able to gain knowledge on paediatric oncology radiotherapy and general procedures for patients with rare cancers. Furthermore, through prior participation in the paediatric radiation oncology training, the paediatric oncologist gained knowledge on modern technologies in radiation therapy and on specific imaging procedures for various cancer types.
The e-Training activity, in which a movie was produced for raising awareness on diagnosis of retinoblastoma, was made available to the paediatric cancer community in English. The awareness for parents, healthcare providers and the outreach to the community has been enhanced.
Through the networks´ Kick off meeting participants achieved a clear understanding of the ERNs and specifically of the ERN-PAEDCAN. They obtained knowledge of general objectives and were actively encouraged to contribute. In the second meeting of the network (ERN-PAEDCAN GA Meeting) participants got a clear understanding of EU ERN activities, and gained knowledge on first year achievements. More importantly, attendees were able to get acquainted with the CPMS system and were supporting in requesting access to the system by the project manager. For both meetings, the agenda, meeting minutes and presentations are available to the ERN-PAEDCAN community.
Outcomes anticipated beforehand that were able to be achieved:
- All network´s activities were carried out based on the Quality Assurance Plan developed at project start.
- The outcome of the two General Assembly meetings was successfully achieved. It was foreseen that meeting participants benefit from the additional knowledge and the target was reached to ensure that the paediatric oncology community acquires higher awareness of the ERN-PAEDCAN network. At both meetings 3-4 members of the European Commission office among those the Director General for Health and Food Safety Mr Xavier Prats-Monné and more than 100 paediatric oncology stakeholders from all over Europe (more than 20 different countries) were able to attend the meeting.
It was expected to create a roadmap among the brain-tumour group and although it was initiated, the parents and survivors roadmap was identified as a priority. The outcome of the Parents and Survivors roadmap is very positive. Parents and Survivors Organisation (PaSOs) are able to identify PaSO Organisations across Europe to exchange information and seek support when aiming for and/or receiving treatment in a CBHC setting.
Regarding activities in the virtual tumour board, it was anticipated to develop a system further as piloted in the ExPO-r-Net project. However the European Commission provided the Clinical Patient Management Tool for free and was therefore adopted as future tool for the ERN-PAEDCAN. The expected outcome of year 1 was to discuss a number of patients which could be achieved. However, it was foreseen to create an outcome survey on patients which were presented to the VTB. Since the CPMS was only launched in November 2017 and the pilot period only ended in February 2018, it was not reasonable to undertake a survey in the first project year.
The expected outcome of the best practice meeting was to develop best practice Guidelines at the end of year one. The guideline development was initiated for all relevant diagnostic and therapeutic components of Neurooncological Cancer. However, the guidelines development takes more time. A very positive outcome of the meeting was that coordinating institutes and healthcare professional sub-groups clearly identified the needs and have taken ownership of this undertaking.
Impact of the Observership and the provided training opportunities take more time to be assessed. The fellowship plan as milestone for this activity will facilitate further twinning programmes throughout the 5- year project duration.
To reach a broad community of paediatric oncologists, parents´ and patients´ organisations and external target audiences information of the network was disseminated at key events (PanCare, Eurordis meeting, CCI- E meeting, etc.). Other actions were carried out to raise awareness, inform, engage and promote ERN-PAEDCAN. Both internal and external dissemination activities took place and the status of the project was publicized to all relevant network stakeholders. A review of all the communication tools follows below.
Project electronic newsletter:
The first issue of the newsletter was disseminated in November 2017 to a targeted audience of 2184 recipients, which includes the ERN-PAEDCAN members and partners.
The open rate for this newsletter was 25.6% and click rate (clinks on the link) of 2.4%.
The electronic newsletter informed members and the paediatric stakeholder community about the News of ERN-PAEDCAN and the General Assembly meeting.
The ERN-PAEDCAN website http://paedcan.ern-net.eu/ was set up in June 2017 and has been available since July 2017. This website provides all relevant information, latest updates, progress, links to newsletter and emails, thereby aggregating all relevant information.
A roll-up Bookmarks and stickers were produced and these items were distributed to interested stakeholders at various events throughout the year – five events in 2018 and eight events in 2017 (during the project duration March 17´- Feb. 18´).
Presence at events:
The ERN-PAEDCAN print collateral (flyers, brochures and Bookmarks) were made available at the display area for the participants at various events.
A roll-up banner was also produced and this was used at various events SIOPE organised or took part in (ICCD2018, ACCELERATE Conference, ESMO 2017, etc.).
Events in 2018:
• International Childhood Cancer Awareness Day (ICCD), 20 February 2018, Brussels, Belgium
• 6th ACCELERATE Paediatric Oncology Conference, 8-9 February 2018, Brussels, Belgium
• ERN PaedCan General Assembly, 1-2 February 2018, Brussels, Belgium
• SIOPE General Assembly, 1-2 February 2018, Brussels, Belgium
• SIOPE Clinical Research Council (CRC), 1-2 February 2018, Brussels, Belgium
Events in 2017 (within the reporting period):
• SIOP Congress, 12-15 October 2017, Washington, USA
• ESMO 2017, 8-12 September 2017, Madrid, Spain
• SIOPE General Assembly, 29 June 2017, Brussels, Belgium
• ExPO-r-Net partners’ meeting, 28-30 June 2017, Brussels, Belgium
• MCCR Workshop, 17-23 June 2017, Zeist, The Netherlands
• UK Childhood Cancer Conference, 9 June 2017, London, UK
• International Childhood Cancer Days 7 March 2017, European Parliament, Brussels, Belgium
• ACCELERATE Paediatric Oncology Workshop, 2-3 March 2017, Brussels, Belgium
Various items such as PowerPoint template, letterhead stationery and acknowledgement statement to the EU were produced. The logo was kindly developed and provided by the European Commission. A specific logo for all healthcare providers included in the network were issued and transmitted to them after signing the sublicensing agreement for use.
Articles published in specialized media:
Regarding external dissemination, two articles were published in the following and widely circulated on social media channels as shown on the below listed “tweets”:
1. ‘The Parliament Magazine’ (June 2017) – online magazine only
2. ‘The Parliament Magazine’ (January 2018) – online magazine only
3. ‘Open Access Government’ (December 2017) – online and print magazine
The SIOPE Newsletter includes interesting articles and updates for the paediatric oncology community. The most recent issue went out in January 2018 (targeting 2708 recipients with an open rate of 20.2%).
The hashtag #ERNPaedCan had 37,211 impressions between May 2017 a