Norwegian Cardiovascular Disease Registry

Rune Kvåle, MD, PhD

Norwegian Institute of Public Health

Background

- Passed by the government in March 2010 and has its own regulations, available from January 2012

- National health registry - personally identifiable data

- Consent not required - compulsory to report

- The Norwegian Institute of Public Health responsible for data management

https://lovdata.no/dokument/SF/forskrift/2011-12-16-1250/KAPITTEL_1#§1-4

Norwegian Cardiovascular Disease Registry

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Co

reR

egis

try

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Norwegian Cardiovascular Disease Registry

Norwegian PatientRegistry

Cause ofDeath Registry

National Registry(Central Person Registry)

Norwegian Patient Registry

Cause of Death Registry

National Registry (Central Person Registry)

Norwegian Stroke Research Registry

Norwegian Registry of Cardiac Surgery

National Norwegian Heart Failure Registry

Norwegian Registry for Invasive Cardiology

Norwegian Myocardial Infarction Registry

Norwegian Cardiac Arrest Registry

Norwegian Registry for Vascular Surgery

The Norwegian Pacemaker- & ICD-registry

Co

re R

egis

try

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Norwegian Registry for Ablation Therapy and Electrophysiology

Norwegian Cardiovascular Disease Registry

Norwegian Patient Registry (NPR)

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https://helsedirektoratet.no/norsk-pasientregister-

npr/om-npr/innhold-og-kvalitet

Administrative Data: Reporting of data started with somatic diseases in 1997

and has gradually been extended with data from other sectors.

From 2008, the administrative data in the register is personally identifiable

Data in the Norwegian Patient Register

Fastlege Vurdering

Hen-visn-ing

113

Hospital 1

Medisinsk

avd.

Kirurgisk

avd.

Hospital 2 Hospital 1

<Episode 1> <Episode 2> < Episode 3 > < Episode 4 >

Hjerteavdelingen

Data registered from every episode

Planlagte opphold

Øyeblikkelig hjelp

Behandling ferdigtildeltDato

innDato

innmateHast

inntilstand

fraSted

omsorgsniva

innTid

mottaksDato

ansienDato

vurdDato

utTilstand

utDato

tilSted

tilstand_1_1

tilstand_1_2

ncmp_1 … 20

tilstand_2_1 … 20

ncsp_1 … 20

utTid

Medisinsk

avd.

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Purpose: To improve the quality of health care for

people with cardiovascular disease

• Information from the registry will be used for health

surveillance, prevention, quality improvement and health

research

• It constitutes a basis for management and planning of

health services aimed at people with cardiovascular

diseases

• Can be used for monitoring of new cases and the

prevalence of these diseases in the population

Norwegian Cardiovascular Disease Registry

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Advantages of the joint registry model:

• Provides a legal basis for the national

medical quality registers

• Possible to coordinate data collection,

processing and analysis on various

cardiovascular diseases

• Opportunities for using already

existing data

• Increased quality through data

collection from different sources

Norwegian Cardiovascular Disease Registry

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• Increased quality through data collection from

different sources

Norwegian Cardiovascular Disease Registry

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Regional affiliation of quality registries:

• Benefits:

• Local academic foundation ->

increased involvement

• Closeness to clinical activities ->

relevant data with better quality

• Cooperation between different professionals

• Challenges:

• Various ICT solutions for registration

• Cooperation between different professionals

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Medical quality registries

• Designed to document treatment

outcomes, and provide a basis for

quality improvement and research

• Official status as a national

medical quality register is

approved by the Directorate of

Health

Norwegian Cardiovascular Disease Registry

Data Sources - 53 National quality registries https://www.kvalitetsregistre.no/registeroversikt

Cerebral parese

Gastronet

Kvalitetsregister for demens

Nasjonalt Kvalitetsregister for Smertebehandling

Nasjonalt barnehofteregister

Nasjonalt hoftebruddregister

Nasjonalt korsbåndregister

Nasjonalt kvalitetsregister for barnekreft

Nasjonalt kvalitetsregister for brystkreft

Nasjonalt kvalitetsregister for døvblindhet

Nasjonalt kvalitetsregister for føflekkreft

Nasjonalt kvalitetsregister for gynekologisk kreft

Nasjonalt kvalitetsregister for lungekreft

Nasjonalt kvalitetsregister for lymfom og lymfoide leukemier

Nasjonalt kvalitetsregister for prostatakreft

Nasjonalt kvalitetsregister for ryggkirurgi

Nasjonalt kvalitetsregister for tykk- og endetarmskreft

Nasjonalt medisinsk kvalitetsregister for barne- og ungdomsdiabetes

Nasjonalt register for KOLS

Nasjonalt register for ablasjonsbehandling og elektrofysiologi i Norge (ABLA NOR)

Nasjonalt register for langtids mekanisk ventilasjon

Nasjonalt register for leddproteser

Nasjonalt register for organspesifikke autoimmune sykdommer (ROAS)

Nasjonalt traumeregisterNordisk register for hidradenitis suppurativaNorsk Diabetesregister for voksneNorsk HjertekirurgiregisterNorsk MS-register og biobankNorsk Parkinsonregister og biobankNorsk Nyrebiopsiregister

Norsk gynekologisk endoskopi registerNorsk hjerneslagregisterNorsk hjerteinfarktregisterNorsk hjertestansregisterNorsk hjertesvikt registerNorsk intensivregisterNorsk karkirurgisk register (NORKAR)Norsk kvalitetsregister for artrittsykdommer (NorArtritt)Norsk kvalitetsregister for behandling av spiseforstyrrelser (NorSpis)Norsk kvalitetsregister for fedmekirurgiNorsk kvalitetsregister for hivNorsk kvalitetsregister for leppe-kjeve-ganespalteNorsk kvinnelig inkontinensregisterNorsk nakke- og ryggregisterNorsk nefrologiregisterNorsk nyfødtmedisinsk kvalitetsregisterNorsk pacemaker- og ICD- registerNorsk porfyriregisterNorsk register for analinkontinensNorsk register for arvelige og medfødte nevromuskulæresykdommerNorsk register for gastrokirurgi (NoRGast)Norsk register for invasiv kardiologi (NORIC)Norsk ryggmargsskaderegister

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Registrere, registrere

Antall pasienter * antall kvalitetsregistre 2012-2015**

Kvalitetsregistre Pasienter Andel

0 638 494 76,3 %

1 131 281 15,7 %

2 50 254 6,0 %

3 13 372 1,6 %

4 3 049 0,4 %

5 578 0,1 %

6 70 0,0 %

7 6 0,0 %

8 0 0,0 %

Sum 837 104 100,0 %

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**Basert på data i HKR basisregisteret fra 2012-2015.

198 610 unike pasienter kvalifiserer til registrering i ett eller flere kvalitetsregistre

67 329 unike pasienter kvalifiserer til registrering i to eller flere kvalitetsregistre

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Quality Registers - should give answers on

• Which measures (diagnostics/

treatment/other) were completed?

• Were measures implemented in line with

current scientific knowledge/were guidelines

followed?

• How did it go with the patients?

• Were resources used rationally?

Quality indicatorsNorwegian Cardiovascular Disease Registry

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Patients treated in stroke-units

Examples

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Examples

Aortic Valve Replacement Therapyin Norway 2012-2015

Patient Characteristics and SurvivalNorwegian Cardiovascular Disease Registry

Eivind Reikerås, Odd Geiran, Svein Rotevatn, Bjug Bøyum, Rupali Akerkar, Rune Kvåle, Marta Ebbing

Examples

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TAVR vs. SAVR

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Cancer Registry – Patient Registry – Death Registry -

Sweden

Examples

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Quality Registry data

Examples

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Strengths and Weaknesses in

Health Registry research

Strenghts – Population-based research

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1. Data already exist

2. Large sample size

3. Data are complete as far as the persons in the target population

- Limited/no selection bias

- No attrition (loss to follow-up) bias

- Possibility to study rare exposure and outcome measures

- Information of exposures and outcomes for the whole population

4. Data are collected independently of research questions

- Prospective data collection (min. recall-bias)

- No differential misclassification («tilfeldig misklassifikasjon»)

5. Valuable time has passed

- Possibility to study diseases in families (generation studies)

6. Adjustment for confounders available to the whole population

Limitations - Population-based research

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1. Data are pre-collected by others than researchers

- Necessary information may be unavailable or misclassified

- Often hard to know exactly how data are generated

- Limited to use variables in register

- Variation in coding between persons and institutions

- Coding used in registers may not be detailed

2. Lack of confounder information

3. Missing data difficult to handle

- Difficult to know what missingness means

- Under-coverage

4. Low or unknown data quality

5. (Left truncation)

6. Data dredging and misleading post hoc analysis (“fisking”)

7. Unimportant differences become statistical significant

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http://statistikkbank.fhi.no/hkr/

Alternative to register research269/30/2016

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