European Expert Paediatric Oncology Reference Network for Diagnostics and Treatment ExPO-r-Net

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Douglas Lindsey
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1 Consumers, Health and Food Executive Agency European Expert Paediatric Oncology Reference Network for Diagnostics and Treatment ExPO-r-Net 1

Quality of the partnership Background The project extends across the whole clinical, research and public health spectrum and encompasses almost all European Member States.

2 Quality of the partnership Background The project extends across the whole clinical, research and public health spectrum and encompasses almost all European Member States. Umbrella: European Society for Paediatric Oncology, SIOPE Integration: European Clinical Research Council (ECRC) for paediatric oncology ( NAPHOS / ECTG) Integration of parents and patients groups (Childhood Cancer International: CCI) Pan-European Network for Care of Survivors after Childhood and Adolescent Cancer, PanCare). Long standing Working relationships: In EC funded projects In European Clinical Trial Group (ECTG) environments, Together in international meetings and stakeholder policy events including European Parliament level. 2

ExPO-r-Net: Key Concept European Reference Networks

rare medical conditions that require highly

3 ExPO-r-Net: Key Concept European Reference Networks (ERNs) are a feature of the EU Directive on Cross-Border Healthcare aiming to unite the best specialists from across Europe to tackle complex or rare medical conditions that require highly specialised healthcare and a concentration of knowledge and resources. 3

Work Packages Who: Coordinator: CCRI-Children s Cancer Research Institute, Austria Associated partners: 18 from 9 European countries incl.

4 ExPO-r-Net: Overview What: Pilot project under EU Health Programme Why: To reduce inequalities in childhood cancer survival and healthcare capabilities in countries across Europe How: By building a European Reference Network for Paediatric Oncology 3 Horizontal Work Packages 5 Thematic Work Packages Who: Coordinator: CCRI-Children s Cancer Research Institute, Austria Associated partners: 18 from 9 European countries incl. SIOPE and CCI Europe members Collaborating partners: > 50 When: (ExPO-r-Net pilot) Real-life PO-ERN (subject to approval under call by European Commission) 4

is even larger for paediatric cancers with poor outcomes CBHC - travel for treatment is a substantial

5 Because all children deserve the best treatment, no matter where they live Access to quality paediatric cancer care varies widely across Europe Results in 10% to 20% difference in outcomes Gap is even larger for paediatric cancers with poor outcomes CBHC - travel for treatment is a substantial burden for families ExPO-r-Net aims to address these issues for the benefit of young patients all over Europe 5

6 ExPO-r-Net PO-ERN Roadmap Healthcare cooperation and resolving expert fragmentation Identifying special therapeutic needs of young people with cancer requiring high expertise interventions with ECTG Examples: special surgery, radiotherapy (proton therapy), stem cell transplants Identifying European institution ready to engage as reference centres by establishing and/or rolling out virtual tumour boards for cross border advice Identifying European Institutions /hospitals offering top level expertise for special therapeutic interventions and referrals SIOPE ERN Roadmap Guidance for Health Care Providers Increased Transparency for Affected Families 6

Major changes in treatment paradigms : intra-arterial and intravitreous chemotherapy, use of pre-enucleation chemotherapy in high risk children but

7 Roadmap: Retinoblastoma Background A rare malignancy of young children ( 10% of tumours in infants) with excellent survival. Implementation of vision-sparing treatments as major aim. Major changes in treatment paradigms : intra-arterial and intravitreous chemotherapy, use of pre-enucleation chemotherapy in high risk children but without harmonized strategy Highly specialised encompassing multidisciplinary care concentrated in a few centres, but is fragmented in many EU countries with low patient accrual. Known centres in EU as global leaders with ability to transfer knowledge to smaller groups. 7

8 HoC #Pts Intraarterial EURbG Varying Hubs of Expertise Brachy therapy Research lab Imaging Paris Extraocular Essen N/A Lausanne Siena Barcelona UK Amsterdam

9 Retinoblastoma Hubs of Coordination Country Institute, Location 1 Belgium Cliniques Universitaires Saint-Luc, Brussels 2 Czech Republic Motol Children s Hospital, St. Charles University, Prague 3 France Institut Curie, Paris 4 France Fondation Rothschild, Paris 5 Germany Charité Universitätsmedizin Berlin (Charité) 6 Germany University Clinic Essen 7 Hungary Semmelweis University Budapest 8 Italy Ospedale Pediatrico Bambino Gesù, Rome 9 Netherlands VU University Medical Center, Amsterdam 10 Poland Memorial Children s Hospital, Warsaw 11 Spain Hospital universitario La Fé, Valencia 12 Spain Hospital Universitario Vall d'hebron 13 Spain Hospital Sant Joan de Déu, Barcelona 14 Spain Hospital Carlos III (Madrid), Madrid La Paz 15 UK Birmingham Children's Hospital (UOB) 16 UK Great Ormond Street Hospital, London 9

Pilot PO-ERN: Retinoblastoma Impact Cross border advisory tumour board: Identification of centres for highly specialized conservative treatments i) brachytherapy, ii) intra arterial and iii) Intra

10 Pilot PO-ERN: Retinoblastoma Impact Cross border advisory tumour board: Identification of centres for highly specialized conservative treatments i) brachytherapy, ii) intra arterial and iii) Intra vitreous chemotherapy Cross border TB advise on treatments: initial therapeutic decision using image transmission (RETCAM, US/OCT, MRI), Selective indication for referring patients in highly specialized centres Harmonization of processes: evaluation, grouping, staging, treatments, network for referral: indications, pathway. 10

11 PO-ERN: Hepatoblastoma Background Annual hepatoblastoma incidence: 1-1,5 case / million, thus expected number of hepatoblastoma cases annually in Europe is Childhood Liver Tumours Strategy Group SIOPEL: European platform with 211 members and global partners to discuss paediatric liver tumours SIOPEL therapy Guidelines: Standard risk SIOPEL3 cisplatin monotherapy High risk non-metastatic SIOPEL3 SuperPLADO High risk metastatic SIOPEL4 dose intensive cisplatin HCC in preparation 11

(one for COG and one for SIOPEL) Drop-down menu Upload of images

12 SIOPEL Virtual Case Consultation system User oriented web portal for virtual advice developed and supported by CINECA, Italy Monitored by two moderators (one for COG and one for SIOPEL) Drop-down menu Upload of images (radiology/pathology) One of the moderators summarises discussion and is responsible for feedback 12

SIOPEL Virtual Case Consultation system Advantages Provide access to global expertise to support clinicians in managing challenging cases, particularly in rare diseases Opportunity to update

13 SIOPEL Virtual Case Consultation system Advantages Provide access to global expertise to support clinicians in managing challenging cases, particularly in rare diseases Opportunity to update clinicians on new developments in diagnosis, risk stratification and treatment approaches Cases storage for training purposes Workflow CASE SUBMISSION BY CLINICIANS PANEL ASSIGNMENT BY MODERATOR IT PLATFORM WEB REVIEW ONCOLOGY PATHOLOGY RADIOLOGY SURGERY 13 CONCLUSIONS BY MODERATOR

14 PO-ERN: Hepatoblastoma Impact Network of European centres of expertise in the treatment of paediatric liver tumors Access to equipment and experience in unique treatment modalities: Liver transplantation (LTX) Chemoembolization (HACE) Radiofrequency ablation (RFA) Complicated liver resections with vascular reconstructions Fully operational Virtual Consulation Forum Standardized consultation and referral criteria European state-of-the art in hepatoblastoma 14

Hepatoblastoma Hubs of Coordination Country Institute, Location 1 Belgium Cliniques Universitaires Saint-Luc, Brussels 2 Czech Republic Motol Children s Hospital, St.

15 Hepatoblastoma Hubs of Coordination Country Institute, Location 1 Belgium Cliniques Universitaires Saint-Luc, Brussels 2 Czech Republic Motol Children s Hospital, St. Charles University, Prague 3 France Institut Gustave Roussy (IGR), Villejuf 4 France Institut Curie, Paris 5 France University of Paris, Kremlin-Bicetre 6 France Hopital Necker Enfants Malades, Paris 7 Germany University of Munich 8 Germany University of Tuebingen 9 Hungary Semmelweis University Budapest 10 Italy Azienda Ospedaliera di Padova (AOPD) 11 Italy Ospedale Pediatrico Bambino Gesù, Rome 12 Netherlands VU University Medical Center, Amsterdam 13 Netherlands Dept. Of Pediatric Surgery center in Utrecht 14 Poland The Medical University of Gdansk 15 Poland Memorial Children s Hospital, Warsaw 16 Spain Hospital Universitario Vall d'hebron 17 Spain Hospital Carlos III (Madrid), Madrid La Paz 18 UK Birmingham Children's Hospital (UOB) 19 UK Leeds Children s Hospital 15

16 Roadmap: Very Rare Tumours Aims Integration of all VRT in a single framework. Not different networks dedicated to single VRT. Advice on Diagnostics and Treatments for Children with VRT Necessary expertise can not be located in a single centre. Joint advice and supervision by a board of VRT experts in a VRT virtual tumour board 16

17 VRT European Reference Network ERN Website VRT ERN Structure VRT Registry International Consultation Desk (Dortmund) Advisory system Groups of Experts Pancreatoblastoma PPB, rare gonadal tumors, thymic tumors,. Coordinating Board National VRT HoC National VRT HoC National VRT HoC Pediatric Oncology Centre Pediatric Oncology Centre Pediatric Oncology Centre Pediatric Oncology Centre Pediatric Oncology Centre Pediatric Oncology Centre Pediatric Oncology Centre 17 Pediatric Oncology Centre Pediatric Oncology Centre Pediatric Oncology Centre

18 Very Rare Tumours Hubs of Coordination Country Institute, Location 1 France Institut Curie, Paris 2 Germany Klinikum Dortmund GmbH (KlinikumDo) 3 Germany Universitätsklinikum Erlangen 4 Hungary Semmelweis University Budapest 5 Italy Azienda Ospedaliera di Padova (AOPD) 6 Italy Istituto Nazionale dei Tumori, Milano (INT) 7 Italy Ospedale Pediatrico Bambino Gesù, Rome 8 Netherlands VU University Medical Center, Amsterdam 9 Poland Marciniak Hospital Wroclaw 10 Poland The Medical University of Gdansk 18

19 ECTGs Hubs of Coordination Country Institute, Location 1 Austria St. Anna Kinderspital (SAK)/Children's Cancer Research Institute (CCRI), Vienna 2 France Institut Gustave Roussy (IGR), Villejuf 3 France Institut Curie, Paris 4 Germany Christian-Albrechts-Universitaet zu Kiel (CAU) 5 Germany Charité Universitätsmedizin Berlin (Charité) 6 Germany Universitätsklinikum Frankfurt 7 Germany Olgahospital, Stuttgart 8 Germany University Hospital Hamburg 9 Germany University Children s Hospital, Bonn 10 Germany Universitätsklinikum Münster 11 Italy Azienda Ospedaliera di Padova (AOPD) 12 Italy Universita degli Studi di Milano-Bicocca, Ospedale San Gerardo di Monza (Biondi, Jankovic) 13 Netherlands Princes Maxima Centrum, Utrecht 14 Spain Hospital universitario La Fé, Valencia 15 Sweden Lunds universitet (ULUND), Lund 16 UK University College London (UCL, Pritchard-Jones, Wheelan) 17 UK Birmingham Children's Hospital (UOB) 19

20 ECTGs Hubs of Coordination 20 Already in Expo-r-Net Acute Lymphoblastic Leukemia (ALL2009, IntreALL, Interfant, ALL-SCT) Brain Tumours ( div. entities) Ewing sarcom Hepatoblastoma LCH Lymphoma (NHL, Hodgin) Neuroblastoma Osteosarcoma Soft Tissue sarcomas(cws, EpSSG) Wilms Tumour Very Rare Tumours paediatric age Invited AML Lymphoma (NHL, Hodgkin)

21 ExPO-r-Net Paediatric Oncology European Reference Network ExPO-r-Net PO-ERN Hubs of Coordination Super -Hubs of Coordination ECTG & Other tbd... Wilms Tumor... Hepatoblastoma network Retinoblastoma network 22 VRT network SIOPE ERN ROADMAP

22 PO Clinical Centres in European Countries with Low Health Expenditure Rates (LHEAR) Preparation of a checklist enabling self-assessment by treatment centres of their compliance with the European Standards Identification of centres in Central/Eastern Europe, which meet specified criteria to fulfil the Standards of Care They will become visible internationally and may in the future interact with hubs of coordination via virtual tumour boards. These identified centres should be able to do baseline care for the patients, with help and advice from tumour boards 23

23 LHEAR Countries in Europe 24

24 Self Assessment Questionnaire based on the Standards of Care Requirements in PO 1 st Assessment run 7 centres UCL London IGR Villejuif Erasmus Rotterdam Milano Kiel Sofia, Bulgaria Bucharest, Romania 25

25 LHEAR National Centres Planned for Site Visits Country Institute, Location 1 Croatia Zagreb UHC 2 Croatia Zagreb KDBZ 3 Czech Republic Praha 4 Czech Republic Brno 5 Hungary Budapest SEMMELWEIS 6 Latvia Riga 7 Lithuania Vilnius 8 Poland Wroclaw 9 Poland Warsaw 10 Poland Cracow 11 Romania Bucharest ICF 12 Romania Bucharest JOB 13 Romania Jasi 14 Slovakia Bratislava 15 Slovenia Ljubljana 26

ExPO-r-Net: Patients, Survivors at Heart Childhood Cancer International Europe (CCI Europe) is instrumental in feeding the needs of childhood cancer parents organisations and survivor

26 ExPO-r-Net: Patients, Survivors at Heart Childhood Cancer International Europe (CCI Europe) is instrumental in feeding the needs of childhood cancer parents organisations and survivor groups to the project. Example: Participation to questionnaires and site visits to centres with the potential to link to the PO-ERN based on European Standards of Care for Children with Cancer. 27

ehealth Interoperability Architecture for ERNs Reliable, secure, standardized and managed web/videoconferencing solution Communication services can be used by all interoperable Apps App 1 virtual

27 ehealth Interoperability Architecture for ERNs Reliable, secure, standardized and managed web/videoconferencing solution Communication services can be used by all interoperable Apps App 1 virtual late effects centre (Survivorship Passport) CINECA App 2 Case Consultation Forums (VRT, SIOPEL, Retino) CINECA App 3 Tumour Board Web Application AIT App 4. (additional Apps) Interfaces to ExPO-r-Net ehealth platform services National (European) Electronic Health Record (EHR) Systems IHE ehealth Platform AIT IHE Electronic Hospital Site Medical Record (EMR) Systems 28

28 ExPO-r-Net: Key Benefits Improved visibility and access to expert care and advise in Europe: A roadmap of centres to allow medical teams to find expert sites for given conditions for advise and patient referral if indicated Information on cross-border treatment modalities: in another EU Member State accessing healthcare or advice received and reimbursement for advise Possibility to be treated at home or abroad: Mechanisms to facilitate movement of information and knowledge rather than patients whenever possible; Progress in instituting virtual late effects centre: incl. operationalising Survivorship Passport Elevated standards of treatment and care across all of Europe 29

THANK YOU! The project ExPO-r-Net has received funding from the European Union in the framework of the Health Programme (2008-2013), grant agreement nr. 2013 12 07.

29 THANK YOU! The project ExPO-r-Net has received funding from the European Union in the framework of the Health Programme ( ), grant agreement nr The content represents the views of the author and is his sole responsibility and it can in no way be taken to reflect the views of European Union bodies. The European Commission and/or Chafea do not accept responsibility for any use that may be made of the information it contains. 30

Table Of Content. Outputs... 9

Table Of Content. Outputs... 9 Table Of Content European Expert Paediatric Oncology Reference Network for Diagnostics and Treatment... 2 Summary... 3 Coordinator, Leader contact and partners... 5 Klinikum Dortmund ggmbh... 5 Uniwersytet