RARECARE project Proposal for improving data quality on rare cancers with high priority

RARECARE projectRARECARE projectProposal for improving data quality on Proposal for improving data quality on

rare cancers with high priorityrare cancers with high priority

Granada, March 25th 2009Andalusian School of Public Health

Rare tumours with Rare tumours with high priorityhigh priority

short listshort list

Short listShort list Mesothelioma Liver angiosarcoma Sarcomas Tumors of oral cavity SNC tumours Germ cell tumours Leukemia Endocrine tumours

Primary prevention

Diagnostic accuracy

Secondary prevention

Quality of care

Data quality

MesotheliomaMesothelioma

Quality of follow-up (high lethality)

Accuracy of diagnosis

0% 10% 20% 30% 40% 50%

Haut RhinIcelandNapoli

NavarraSomme

UK_West MidlandsMacerata

UK_East AngliaUK_Scotland

MaltaUK_Oxford

ValaisUK_South Western

BiellaAmsterdam

Reggio EmiliaNorway

UK_TrentSlovenia

UK_Northern&YorkNorth Netherlands

TorinoTarragonaEindhovenUK_WalesSt. Gallen

GenovaBas RhinMancheSwedenVenetoFerraraWarsawTrentoHeraultParmaUmbria

UK_NorthernBasque Country

FlemishMurciaIreland

SaarlandRomagna

VareseTicino

FirenzeFriuli V.G.

SassariTarnIsere

South PortugalAustria

ModenaBasel

SalernoAlto Adige

GironaGeneva

DoubsCracowRagusa

Kielce

Mesothelioma,

3-year relative survival by registry

Angiosarcoma Angiosarcoma of liverof liver

Angiosarcoma Angiosarcoma of liverof liver

Source: Lancet Oncol. 2006 Feb;7(2):132-40

Anne Marie will refer

SarcomaSarcoma

% of sarcoma NOS

0 5 10 15 20

CalvadosWarsaw

BaselRagusaSassari

AmsterdamNavarra

SloveniaFirenzeCracow

Haut RhinFerrara

IsereBas Rhin

IcelandGironaMurciaHerault

Basque CountryIreland

UK_East AngliaGenova

St. GallenEindhoven

MancheTarn

DoubsUK_Oxford

SaarlandTicino

AustriaUK_Northern&Yorks

North NetherlandsBiella

GranadaUK_West Midlands

MaltaParma

SommeFlemishGeneva

UK_South WesternUK_Scotland

NorwayTorino

ModenaVarese

UK_WalesCalvados digestive

VenetoTarragona

ValaisRomagnaUK_Trent

UK_Northern IrelandReggio Emilia

KielceFriuli V.G.Macerata

TrentoNapoli

Loire AtlantiqueSalernoUmbria

SwedenSouth Portugal

Alto Adige

% Sarcoma NOS% Sarcoma NOS by registryby registry

Tumors of oral cavityTumors of oral cavity

stage at diagnosis

CNS tumoursCNS tumours

Benign/borderline/malignant ICD-O changes (i.e pilocytic astrocytoma)

Cultural attitudes of pathologists(high variation in survival) Quality of follow-up (high lethality)

Ryszard showed usRyszard showed us

Brain tumoursBrain tumours5-year survival in Europe5-year survival in Europe

From 27% to 16%

>20% (Finland, Iceland, Norway, Ireland, Wales,Austria, Belgium, Germany, Switzerland, Portugal)

19.7%Source: Sant et al, EJC, 2008

Germ cell tumoursGerm cell tumours

Ovarian germ cell tumourOvarian germ cell tumour

Indicator of data Indicator of data qualityquality

Inconsistency in diagnosis &coding criteria

Geographical variation in incidence

Indicator of data qualityIndicator of data quality MV DCO Lost to f-uMV DCO Lost to f-u

Source: Lancet Oncol. 2006 Feb;7(2):132-40

Crude and standardised incidence rates; range Crude and standardised incidence rates; range of incidence across regionsof incidence across regions (ratio) (ratio)

Germ cell tumoursGerm cell tumours

% of morphology NOS

among the relevant cancer sites

leukaemialeukaemia

% of morphology NOS

% of leukaemia NOS by registry (average 6%)

0% 10% 20% 30% 40%

ConclusionConclusion

Short list (agreement) Data quality analysis on information

already available to registries (ICD-O codes, incidence and survival analyses)

Check of morphology codes NOS and its impact on incidence and survival

Further clinical information Further clinical information to be collectedto be collected

Stage Treatment Hospital for diagnosis and treatmentBiomarkers?Prognostic factors?Other?