General Assembly, 26th October, 2018, Milan   WP 4 – EPIDEMIOLOGY Cancer registries vis-a-vis ERNs right now and future perspectives GEMMA Gatta

Objectives agreement on the list of rare cancers and endorsement of MSs (task 1); recommendations to improve the data quality of rare cancers in population based registries (task 2); recommendations for rare cancers indicators by Europe and country, minumum data set for registries (task 3); to propose a model to evaluate the impact of ERNs using population-based CRs (task 4).

CR=population-based cancer registries Can population based cancer registries help in the evaluation of rare cancers attivities? Planning, ERN evaluation, research Based on the experience of RARECARE and RARECAREnet Definition , list and estimation of the rare cancer burden High resolutions studies (centre of excellence) Pilot study on centralization/volume hospital CR=population-based cancer registries

Can CR help in the evaluation of rare cancers attivities Can CR help in the evaluation of rare cancers attivities? Based on the experince of RARECAREnet project Mean admission volume by country and rare cancer (2002-2007)

Can CR help in the evaluation of rare cancers attivities Can CR help in the evaluation of rare cancers attivities? Based on the experince of RARECAREnet project

Task 4.2 Quality of data in CRs to show and ensure that the quality of rare cancers registration is high Recommendations to ensure and improve quality of registration of specific rare cancers for which guidelines are not currently available Meetings: February 2018 workshop in Murcia  By max March 2019, meeting with CRs to discuss recommendations. Recommendations discussed at the ENCR SC and JRC ENCR Copenhagen meeting

Quality of cancer registration (task 2) leader FFIS, Spain

Task 4.2 Quality of data in CRs, the ENCR recommendations

Rare cancers with no guidelines on data quality Meeting in Murcia, February, 2018 Focus on: Sarcoma GIST Neuroendocrine tumours Thymus, epitelial tumours Next meeting March 2019 to finalise the recommendations to be included in the ENCR guidelines for data quality in cancer registration

Rare cancer data quality, why we focus on few specific rare cancers? GIST GEP-NET Poorly differenciated

Contribution to the

CR=population-based cancer registries Have or will have CR relevant clinical information for the evaluation of ERN? (task 2,3) 1. we need to know the list of indicators for the evaluation of ERN 2. Identify key variable CR have to routinely collect in order to evaluate ERN and facilitate research Pilot study on Toronto guidelines application (childhood cancer stage) Report on pro and cons of the RARECAREnet high-resolution and pilot studies One or two meetings to finalise the issues (indicators and availabiliby of information by CR), at the beginning of 2019 CR=population-based cancer registries

Registries, countries, period, cases Belgium Denmark France Greece Hungary Italy (7) Malta Norway Portugal (1) Slovakia Slovenia Spain (5) Switzerland CASES Neuroblastoma = 499 Nephroblastoma = 387 complete incidence, at least 10 cases per tumour PERIOD OF DIAGNOSIS 2002-2015 26 25 20 34 29 23 22 214 145 22 181 97 Malta 23

Toronto stage, collected : 97% collected on a sample 886 European cases diagnosed during 2002-2015

Model to evaluate impact of ERN (task 4) leader UVEG, Spain Linkage between clinical ERN data base and CR Pilot study in Spain between CR and clinical neuroblastoma database CR=population-based cancer registries CR=population-based cancer registries

Contribution to the

Model to evaluate impact of ERN (task 4) leader UVEG, Spain Linkage between clinical ERN data base and population based CR Pilot study on in Spain between CR and clinical national neuroblastoma database Conclusion from the experience: Semiautomatic linkage: data protection and /or software of linkage Need of a common ID Need to identify key variables for an efficient linkage Possible formal agreement between ERN hospital database and CR Further analyses: access to the best treatment (coverage of the clinical database), clinical variables from clinical database, etc

Future JARC (WP4) challanges Positioning population based cancer registries in the framework of the ERN evaluation and for research on rare cancers within the ERN (in collaboration with WP7) Position paper (JARC and ENCR) for increasing awareness of the role of CR and center clinical database within the ERN