PARTNER Kick-off meeting in Brussels
Brussels, 2 February 2018 – The Kick-off Meeting of the ERN-PAEDCAN Partner: Paediatric rare tumours network – European registry project was held just after the ERN PaedCan General Assembly on 2 February 2018 in Brussels. PARTNER is one of the five projects funded by the 3rd Health Programme. Five EU countries involved as Associated partners and 18 as Collaborating partners, including 9 Centres from Low Health Expenditure Average Rate (LHEAR) countries, 2 non-EU countries and 1 parent’s organization work together and are looking for a novel solution in the field of the virtual integrated healthcare system.
The project was judged innovative because it will create a Paediatric Rare Tumour European Registry (PARTNER) dedicated to children and adolescents with VRT (Very Rare Tumours) linking the existing national registries and providing a registry for those countries not already having a registry for VRT in place. The European Registry will be an essential part of the activity of the VRT subnetwork part of the ERN PaedCan. The possibility to link the registry with a virtual consultation system and the elaboration of diagnostic/treatment recommendations will create a platform that can be easily accessed by EU Health care providers. The increasing expertise in VRT based on the data collected in the European registry will increase the capacity to provide international consultation and define standard of treatment recommendations. This will ultimately result in improved patients’ care and reduce currently existing inequalities in cancer outcome across EU member states.
The project is funded from 1 January 2018 until 31 December 2018 and financed by the Consumers, Health, Agriculture and Food Executive Agency (CHAFEA) with a total budget of EUR 666,644.24. PARTNER projects team consists of Azienda Ospedaliera di Padova (IT), St. Anna Kinderkrebsforschung (AT), Klinikum Dortmund (DE), Karls Universitaet Tuebingen (DE), Institute Curie (FR), Gdanski Uniwersytet Medyczny (PL). PARTNER will be strongly promoted by SIOPE Clinical Research Council for paediatric and adolescent oncology (SIOPE CRC), which will implement the broad dissemination strategy of the project.
The Kick-off Meeting was welcomed by the Project Scientific Coordinator, Professor Gianni Bisogno, who presented PARTNER to the consortium starting from the Logo concept idea and the geographical distribution of the consortium members. Professor Gianni Bisogno gave an overview of the whole project, comprehensive of the tasks of each WP and Partner, and then each Leaders of work packages had the chance to present their organization, the role they will have and the activities they will carry out during the project.
A Technical round table followed, with the presentation of the challenges, objectives and the steps to be taken during the project, with a focus on the activities to be carried out in the next 12 months.
1st PARTNER Consortium Meeting
Luxembourg, 17 April 2018 – The PARTNER members gathered together for its 1st Consortium meeting after the project’s kick-off in February. The meeting, hosted by the CHAFEA, the Consumers, Health, Agriculture and Food Executive Agency, took place on 17th April 2018 in Luxembourg just after the Rare Diseases Registries Projects’ Kick-Off Meeting.
During the meeting issues concerning all the working groups and tasks are discussed. The leaders of the WPs presented the status of the works concerning their focus areas, then the whole consortium could continue the development in order to deliver the deliverables and achieve the milestones by the end of the first year of the project.
For what concerns the technical aspects of the PARTNER project, methodologic issues were raised and discussed, regarding both the drafting of VRT guidelines and the identification of a list of variables to be included in the European database. Among several options in use in the scientific community and reported in the literature, the more appropriate methodologies to drawing up guidelines for VRT have been elucidated and it has been collegially decided to circulate a document for the final approval. On the other hand, the list of variables is currently in progress, and it will be defined after the classification and evaluation of the lists of variables collected in the already existing national registries.
Finally, the consortium decided to meet again in September 2018.
2nd PARTNER Consortium Meeting and LHEAR countries PARTNERship meeting
Gdańsk, 14 September 2018 – The 2nd PARTNER Consortium Meeting was held in Gdańsk on the 14th of September 2018 in the first half of the day. The event has been hosted by the Gdanski Uniwersytet Medyczny (GUMed) team led by Dr Ewa Bien at the Atheneum Gedanense Novum premises. Each partner involved in the PARTNER team has presented its achievements in the context of its research activities and has assessed the general progress made on the project.
21 members of the 6 Associated partners and 6 Collaborating partners of the Consortium attended the meeting and collectively reviewed the Work Packages progress in the past months. The first session was devoted to six interesting and productive panels organised during the meeting allowing the participants for more insightful discussions.
The panels were devoted to the following topics:
- WP1 Coordination of the project – Discussion on software development and sustainability requirements to address the user needs by reviewing a collection of User interface mock-ups proposed by consortium members.
- WP2 Dissemination of the project – Review of project communication tools and events in order to improve communication through the implementation of community actions which are more visible and closer to patients.
- WP3 Evaluation of the project – Feedback provided to project partners for corrective action: monitor-review-remedy model
- WP4 Analysis and harmonization of data acquisition of the existing national VRT registries – Update on the state of acquisition of core and specific variables collected from the four national registries (TREP, FRACTURE, STEP and Polish Registry). Integration of the set of common data elements in the PARTNER registry has been discussed in order to adhere to ERDRI requests (European Platform of rare diseases registries). Identification of the VRT entities that should be included in the EU registry. Definition of general data sheet for the PARTNER registry that will be circulated and approved. Definition of which tumors would need specific forms: Nasopharyngeal Undifferentiated Carcinoma, Adrenocortical carcinoma, Salivary gland carcinoma and Melanoma have been chosen as first four tumors for which to create specific PARTNER guidelines and they will need specific forms as well. Furthermore, specific forms will be created with the help of Dr. Calogero Virgone: adrenocortical tumours, thyroid tumours, pheochromocytoma, appendix carcinoid, nasopharyngeal carcinoma, small intestine carcinoids, pulmonary blastoma. Some specific forms have already been prepared and been circulated for approval, together with the Data Dictionary: Melanoma and skin tumours, Colorectal carcinoma, Salivary gland tumours, Pancreatic tumours, Mesothelioma, Thymoma and thymic carcinoma.
- WP5 Creation of a European registry for paediatric patients with very rare tumours – PARTNER registry’s structure is presented and discussed. Embedding of EuPID in the registry is discussed. Data transfer from/to national registries is discussed. Integration of the set of common data elements in the PARTNER registry in order to adhere to ERDRI requests (European Platform of rare diseases registries) is underlined: definition of which variables (among the set of common data elements) are to be included and collected within the PARTNER project.
- WP6 Standard of care recommendations for children with VRT – Definition of which tumours would need specific forms after survey done among partners: Nasopharyngeal Undifferentiated Carcinoma, Adrenocortical carcinoma, Salivary gland carcinoma and Melanoma have been chosen as first four tumors for which to create specific PARTNER guidelines. Working group have been created and methodology is discussed and approved (Consensus Conference Standard Operating procedures according to the ESMO guidelines).
Professor Gianni Bisogno, Project Coordinator of the PARTNER project caught the attention of the consortium with valuable scientific recommendations and useful input for the dynamics and progress of the project.
The second session of the meeting organised by GUMed focused on the Integration of LHEAR countries in the EU platform dedicated to VRT in paediatric age. The main discussion of the LHEAR countries PARTNERship meeting was about the inclusion of LHEAR countries representatives in the elaboration of standard of treatment recommendations in collaboration with the Institute Curie (CURIE) lead of WP6. This collaboration will aim to make the standard of care recommendations as much as possible applicable in LHEAR countries and provide documents translation for better dissemination.
Finally, the consortium decided to meet again on January/February 2019.
3rd PARTNER Consortium Meeting, 2nd Consensus meeting on harmonization of data acquisition and EXPeRT meeting
Brussels, 30 January 2019 – The 3rd PARTNER Consortium Meeting was held in Brussels on 30 of January 2019. Nearly one year after the launch of the project, this event has been a great opportunity for participants to present the progress of their work and exchange on their findings and methodologies, as well as to plan future actions. This event has been organised by Prof. Gianni Bisogno (AOPD), Ines Brecht (EKUT) and Andrea Ferrari (EXPeRT), with the support of the SIOP Europe office.
The second session of the meeting organised by Dr Ines Brecht (EKUT) was focused on Harmonization of data acquisition of the existing European registries. The main discussion of the 2nd Consensus meeting on harmonization of data acquisition was about the national registries which must report the tumour entities and variables included in their national data registries. The final goal of the partners is to reach an agreement on the entities to be collected and the variables of the existing registries. This shall be done in close cooperation with AOPD (leading WP5) and IT experts who have been invited to attend the meeting.
The third meeting was organised by Dr Andrea Ferrari (Istituto Nazionale per la Cura dei Tumori), chairman of the European Cooperative Study Group for Pediatric Rare Tumors (EXPeRT) and was focused on rules of membership and on the programme of the SIOP Europe 2019 Annual Meeting in Prague (May 2019) and on EXPeRT retrospective studies and publications (Salivary Gland Tumors, Mesothelioma, project on Molecular profiling for rare tumours). 30 members of the 30 participants from 16 institutions attended the meetings and collectively reviewed the Work Packages progress in the past months. Finally, the consortium decided to meet again in June 2019 in Tübingen, Germany.
4th PARTNER Consortium Meeting and 3rd IT Consensus meeting – Creation of a European registry for paediatric patients with very rare tumours and harmonized procedures of data registration
In total 22 representatives participated in the meetings, both personally and virtually, and all project partners were represented. The meetings were characterized by high motivation and a friendly and collaborative atmosphere.
5th PARTNER Consortium Meeting and EKUT Round Table discussion
Brussels, 12 February 2020 – Following the four first consortium meetings, considerable progress has already been made. Project partners are now well set to move forward in the construction of a European Registry dedicated to children and adolescents with VRT linking existing national registries.
After an intense meeting between EXPeRT members on 11th February 2020, the PARTNER consortium held its 5th Consortium Meeting and EKUT Round Table discussion. These meetings took place in Brussels on the 12th of February 2020 and were hosted by SIOPE. Moderated by Prof. Gianni Bisogno, the consortium gathered to discuss the project advancements, agree on next steps, and continue to ensure alignment of project activities with the overall goals and the evolving European registry. During the project meeting, advancements in the development of a risk governance framework for the safety of registry were presented, alongside discussions on nature and its structure. The PARTNER members will build on the momentum created by the fruitful discussions during the M5 meeting to continue to develop the risk governance framework, as well as the structure of the registry, in partnership with the ERN PAEDCAN.
In total 34 representatives from 26 organisations participated in the meetings and all project partners were represented. The meetings were characterized by high motivation and a friendly and collaborative atmosphere. Many PARTNER members also plan to attend the upcoming 2nd Annual Meeting of SIOPE this May in Seville, the next ERN PAEDCAN GA in autumn and, and officially convene again for the next consortium meeting in June 2020!
In the meantime, stay tuned for more updates by following our newsletter via website www.siope.eu, and if you are an expert in the field and interested in participating as a stakeholder in the project, please visit our section Visit us and/or write an email to email@example.com.
- International Childhood Cancer Day (ICCD2018) at the European Parliament: 20 February 2018, Brussels, Belgium
- SIOPE – MAC (MEPs Against Cancer) at the European Parliament: 25 September 2018, Brussels, Belgium
- International Childhood Cancer Day (ICCD2019) at the European Parliament – 06-03-2019 Brussels – Belgium
- ECCO 2019 – European Cancer Summit – 12-14.09.2019 Brussels, Belgium
- Quality Cancer Care Week 2019 – 4-10.11.2019 Brussels, Belgium
- ESMO 2018 Congress: 19-23 October 2018, Munich, Germany
- SIOP 2018 Congress: 16-19 November 2018, Kyoto, Japan
- SIOP 2019 Congress – 23-26.10.2019 Lyon France
- Pediatric radiation therapy course – 03.10.2019, Padua, Italy
- ESMO 2019 Congress – 27-09.2019 – 01.10.2019 Barcelona, Spain
- SIOP Europe 2019 Annual Meeting – 20-25.05.2019 Prague, Czech Republic
- ERN-PAEDCAN General Assembly meetings – 1-2 February 2018 and 25-26 September 2018, Brussels, Belgium
- EU RD Platform ERDRI (European Rare Disease Registry Infrastructure) Training Workshop – 08.10.2019, Ispra, Italy
- Workshop on Registries for European Reference Networks (ERNs) organized under the ERN Research Working Group – Registries Task Force – 18.07.2019, Brussels, Belgium
- 2019 CHAFEA Workshop On Reporting And Payment Procedures For Grants (REPA 2019) – 18.06.2019, Luxembourg
- Meeting of the ERNs Registries Projects – 03.06 2019, Milan, Italy
- ERN Follow up meeting – 23.05.2019, Padua, Italy
- 3rd ERN PaedCan General Assembly – 31-01.2019 and 01-02.2019 Brussels, Belgium
- 4th ERN PaedCan General Assembly – 17-18.01.2019 Brussels, Belgium
- 9th CCI Europe Conference: 14 April 2018, Lisbon, Portugal
- 21th PanCare Conference: 18-20 April 2018, Prague, Czech Republic
- 22nd PanCare Conference: 24-26 October 2018, Paris, France
- 10th CCI Europe Conference – 20-25.05.2019 Prague, Czech Republic
- 24th PanCare Meeting – 11-13.09.2019 Basel, Switzerland
- 23rd PanCare Meeting – 24-26.04.2019 Opatija, Croatia
The results achieved and the tools developed within PARTNER are being disseminated through strategic collaborations (joint events, position papers, etc.) with organisations at European and international levels. These partner organisations reflect the target groups identified for PARTNER dissemination and are presented below:
- European CanCer Organisation (ECCO): Federation of professional cancer societies of which SIOPE is member, regularly participating in the ECCO Cancer Congress with a variety of activities incl. PARTNER dissemination (during the reporting period: ECCO 2018 European Cancer Summit, September 2018);
- International Society of Paediatric Oncology (SIOP): of which SIOPE is a continental branch, participating in the annual international congress (during the reporting period: November 2018) with a variety of activities incl. PARTNER dissemination;
- SIOPE European Clinical Research Council for paediatric and adolescent oncology (SIOPE CRC): represents the paediatric oncology clinical research community across Europe. Established to facilitate good research practice exchange amongst international co-operative groups, this executive decision-making body expresses the unified voice by dealing with common burning issues in the field and by representing the point of view of National Paediatric Haemato-Oncology Societies (NaPHOS) and European Clinical Trial Groups (ECTGs) at the highest European political level with a variety of activities incl. PARTNER dissemination (during the reporting period: September 2018).