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

2. 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).

3. 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

4. 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 ( )

5. 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

6. 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

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

8. Task 4.2 Quality of data in CRs, the ENCR recommendations

9. 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 to finalise the
recommendations to be included in the ENCR guidelines
for data quality in cancer registration

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

11. Contribution to the

12. 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

14. 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 26 25 20 34 29 23 22
214
145 22
181 97
Malta 23

15. Toronto stage, collected : 97%
collected on a sample 886 European cases diagnosed during

16. 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

17. Contribution to the

18. 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

19. 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