1. WP 4 – EPIDEMIOLOGY GEMMA Gatta
General Assembly, 16th October, 2017, Milan
WP 4 – EPIDEMIOLOGY 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. List of rare cancers (task 1) published by the two EU projects

4. List of rare cancers (task 1) also available at the RARECAREnet website search tool

5. List of rare cancers (task 1)
for solid tumours ERN (EURACAN) list used by MS to identify health care providers to include in the ERNs for rare cancers
Which cancers are rare?
Updated list : first deliverable at 18° month

6. Present the list, its rationale and support use in different context
List of rare cancers (task 1) Meeting on rare cancer list in January, 2018
Points:
Present the list, its rationale and support use in different context
Discuss major issues with the list from different stakeholder prospective
Find solution to have a list of rare cancers useful for all the stakeholders

7. Stakeholders involved JARC MSs Patients associations EMA Orphanet
List of rare cancers (task 1) Meeting on rare cancer list in January, 2018
Stakeholders involved
JARC MSs
Patients associations
EMA
Orphanet
ENCR (network of European registries)
Scientific societies
ERNs

8. Cancer registration (task 2) leader FFIS, Spain

9. Cancer registration (task 2)
Teleconferences, mail exchange and yesterday meeting
Definition of the working group
Identification of major challenges for rare cancer registration
Circulation of first documents/proposals
First meeting February 2018

10. Cancer registration (task 2) Dissemination and meetings
Annual meeting of cancer registries (GRELL, ENCR/JRC, …)
To present the study and discuss recommendations
Final publication of the study (proposal) as special issue of a scientific journal.

11. Methods for descriptive and outcome indicators (task 3), leaders INT&EASP (Italy, Spain)
Descriptive indicators: Incidence, survival and prevalence
Outcome indicators: ad hoc collection through high resolution studies
The major aim is to provide surveillance in Europe for the ERN and Health Care System

12. Methods for descriptive and outcome indicators (task 3) deliverable (M24)
Recommendations for standardised estimation of rare cancer indicators by Europe and country

13. Methods for descriptive epidemiology in rare cancers (task 3)
Definition of the group of interested partners √
Each participant indicated relevant papers on the topics in discussion √
In preparation a proposal concept document based on our experience and on the literature
Prepare and circulate a first draft of the final document
Prepare the final draft and submit the Task document

14. Methods descriptive epidemiology rare cancers (task 3)
Topics to be addressed (already circulated in a document, milestone 4.5)
Providing rare cancers epidemiological estimators for incidence, survival, prevalence, and mortality from registry data.
Relative advantages and disadvantages of point estimates vs model based estimates.
Relative advantages and disadvantages of frequentist vs Bayesian approach.
Performance indicators: precision, accuracy, robustness.
Incidence, survival, and cancer type distribution homogeneity across regions.
At which level of rarity normal methodology breaks down and special methods are required
Estimates in populations not covered by cancer registration

15. Definition of outcome indicators to assess the ERN impact at the population level (task 3)
ERN 3 groups of rare cancers: solid paediatric, haematologic, evaluation using cancer registry data on:
Access to ERN
Quality of care
Survival
differences between patients accessing or not the ERN
Definition of a minimum data set of clinical variables to
be collected by registries, in connection with task 2

16. Pilot study (task 3) neuroblastoma and nephroblastoma
Staging childhood cancer in population based cancer registries, endorsed by the UICC

17. Cancer registration (task 3) pilot study on neuroblastoma and nephroblastoma
Staging childhood cancer in population based registries
(in collaboration with Prof. Kathy Pritchard-Jones from SIOPE)
First draft of the protocol circulated
13 European countries accepted to participate
First teleconference 25°Oct 2017
By the end of April the preliminary results
Final meeting presenting the results before the end of June

18. Model to evaluate impact of ERN (task 4) leader UVEG, Spain
Linkage between clinical and population
based databases (neuroblastoma)
Several steps already done
SIOPEN approuval
Questionnaires to registries both population and clinical based
Still collecting and sollecitating for the completated questionnaires

19. To conclude We are aware that the second year is strategic for
conclude with the recommendation at 30° month
2nd year milestones:
Several small meetings to discuss data quality
2nd year deliverables:
List of rare cancers (M18)
Document on methodology for rare cancers burden estimation (M24)