Diapositiva 1

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RARECARE project Data quality and supplementary
information Granada, March 25th
2009 Andalusian School of Public Health
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Surveillance of rare cancer in Europe

• Aims
• To provide a definition of rare cancers and a
  list of cancers
• To estimate the burden of rare cancers in Europe
• To improve the quality of data in cancer
  registration
• To develop strategies for the diffusion of
  information among all the key players
• Actions
• To provide figures on incidence, survival,
  prevalence and mortality for all rare cancers
• Data quality will be analysed for a subset of
  cancers
• A web-site on rare cancers will be designed to
  disseminate results
• Duration 3 years

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1 year of activities
WP Deliverables and milestones Month
Coordination Management committee member list and date of the first meeting 2
DATA QUALITY Minutes of the meeting with cancer registries available to work on quality analysis 6
Dissemination Description of the project for the web 12
Coordination First interim report 12
Dissemination Release of the web-site to the public 12
Evaluation Steering Committee member list, 1 meeting, and minutes of the meeting, list of performance indicators 12
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2 year of activities
WP Deliverables and milestones Month
WP4 (List) List of rare cancers 18
DATA QUALITY Meeting with cancer registries available to work on data quality 24
Dissemination Publication plan 24
Coordination WP5 (indicators) Technical report of the basic/macro indicators of rare cancers and second interim report 24
WP4 (List) Short list of rare cancer with high priority 24
Evaluation Steering Committee member list, 1 meeting, and minutes of the meeting, list of performance indicators 12
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3 year of activities
WP Deliverables and milestones Month
Dissemination List of scientific meetings fro the dissemination of results 30
DATA QUALITY Report with quality considerations on the available data on rare cancers 30
DATA QUALITY Promotion of the first seminar on classification and coding problems addressed to CRs people 36
Coordination Final report 36
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AIMS of the meeting

• To discuss on how to improve data quality in rare
  cancers registration
• To agree on a common work for improving data
  quality
• To agree on a protocol for the check of the cases
  and the collection of further clinical
  information
• To plan a seminar on rare cancers data quality

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What we have done until now
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List of rare tumours and rationale
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List of rare cancers

• List of tumour entities
• Not a new classification
• Rarity determined by frequency
  Incidence/Prevalence

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Frequency

• Incidence better indicator for rare cancer
• Prevalence better indicator for non neoplastic
  rare diseases
• Therapy indicates the choice of the best
  indicator
• Awareness of regulatory issues on orphan drugs

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The Way to the list

• Proposal from RARECARE WP4
• Group of experts (pathologists, oncologists and
  epidemiologists)
• Consensus workshops
• Brussels and Treviso
• WEB based discussion
• Consensus with scientific bodies

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The Rationale behind the List

• Three layers
• Families of tumors
• Tumors characterized by a common
• referral pattern
• Tumors perceived by clinicians as a single
  disease entity
• WHO coded entities

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The Rationale behind the List

• First layer ? common referral pattern.
• Organization of health care
• Second layer ?
• Clinical decision making clinical research
• Third layer ? all WHO tumor entities

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Rare tumours, short list (WP4, Dei Tos)

• proposal

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criteria

• Primary prevention
• Secondary prevention
• Diagnostic accuracy
• Quality of care
• Clinical research feasibility
• Data quality

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Criteria, primary prevention

• Mesothelioma (asbestos)
• Liver angiosarcoma (vinyl chloride)

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Criteria, diagnostic accuracy

• Sarcomas

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Criteria, secondary prevention

• Tumors of oral cavity

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Criteria, Quality of care

• SNC tumors
• Germ cell tumors
• Leukemia

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Other criteria?

• Data quality
• (merkel skin, haematologic tumours, GIST,
  neuroendocrine tumours)

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Second year major activity
Deliverable no. 13 Technical report with basic
indicators for rare cancers and health care
related macro indicators To be provided within
the 24 month
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RARECARE second year projectRESULTS, indicators

• Incidence
• Survival
• Prevalence
• Mortality
• of cured
• For 230 rare entities

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Results, lay out
Incidence, prevalence and mortality table
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Survival Tables
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Further information from CRs

• Stage
• Treatment
• Hospital for diagnosis and treatment
• Biomarkers?
• Prognostic factors?
• Other?
• Sandra

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End of the presentation

• and again

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Thank you for coming

• and enjoy the meeting