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Norwegian cardiovascular disease registry rune kvåle
- 1. Norwegian Cardiovascular Disease Registry Rune Kvåle, MD, PhD Norwegian Institute of Public Health
- 2. 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 9/30/2016 Norwegian Cardiovascular Disease Registry 2
- 3. CoreRegistry 9/30/2016 Norwegian Cardiovascular Disease Registry 3 Norwegian Cardiovascular Disease Registry Norwegian Patient Registry Cause of Death Registry National Registry (Central Person Registry)
- 4. 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 CoreRegistry 9/30/2016 Norwegian Cardiovascular Disease Registry 4 Norwegian Registry for Ablation Therapy and Electrophysiology Norwegian Cardiovascular Disease Registry
- 5. Norwegian Patient Registry (NPR) 9/30/2016 Norwegian Cardiovascular Disease Registry 5 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
- 6. 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. 9/30/2016 Norwegian Cardiovascular Disease Registry 6
- 7. 9/30/2016 Norwegian Cardiovascular Disease Registry 7 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
- 8. Cardiovascula r Disease Registry Norwegian Cardiovascular Disease Registry 27. april 2016 9/30/2016 8 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
- 9. Norwegian Cardiovascular Disease Registry 927. april 2016 • Increased quality through data collection from different sources Norwegian Cardiovascular Disease Registry 9/30/2016 9Norwegian Cardiovascular Disease Registry
- 10. Cardiovascula r Disease Registry Norwegian Cardiovascular Disease Registry 27. april 2016 9/30/2016 10 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 Norwegian Cardiovascular Disease Registry
- 11. 9/30/2016 11Norwegian Cardiovascular Disease Registry 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
- 12. 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 traumeregister Nordisk register for hidradenitis suppurativa Norsk Diabetesregister for voksne Norsk Hjertekirurgiregister Norsk MS-register og biobank Norsk Parkinsonregister og biobank Norsk Nyrebiopsiregister Norsk gynekologisk endoskopi register Norsk hjerneslagregister Norsk hjerteinfarktregister Norsk hjertestansregister Norsk hjertesvikt register Norsk intensivregister Norsk karkirurgisk register (NORKAR) Norsk kvalitetsregister for artrittsykdommer (NorArtritt) Norsk kvalitetsregister for behandling av spiseforstyrrelser (NorSpis) Norsk kvalitetsregister for fedmekirurgi Norsk kvalitetsregister for hiv Norsk kvalitetsregister for leppe-kjeve-ganespalte Norsk kvinnelig inkontinensregister Norsk nakke- og ryggregister Norsk nefrologiregister Norsk nyfødtmedisinsk kvalitetsregister Norsk pacemaker- og ICD- register Norsk porfyriregister Norsk register for analinkontinens Norsk register for arvelige og medfødte nevromuskulære sykdommer Norsk register for gastrokirurgi (NoRGast) Norsk register for invasiv kardiologi (NORIC) Norsk ryggmargsskaderegister 9/30/2016 12Norwegian Cardiovascular Disease Registry
- 13. 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 % 9/30/2016 Norwegian Cardiovascular Disease Registry 13 **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
- 14. Cardiovascula r Disease Registry 27. april 2016 9/30/2016 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 indicators Norwegian Cardiovascular Disease Registry
- 15. 9/30/2016 Norwegian Cardiovascular Disease Registry 15 Patients treated in stroke-units Examples
- 16. 9/30/2016 Norwegian Cardiovascular Disease Registry 16 Examples
- 17. Aortic Valve Replacement Therapy in Norway 2012-2015 Patient Characteristics and Survival Norwegian Cardiovascular Disease Registry Eivind Reikerås, Odd Geiran, Svein Rotevatn, Bjug Bøyum, Rupali Akerkar, Rune Kvåle, Marta Ebbing Examples
- 18. 9/30/2016 18Norwegian Cardiovascular Disease Registry TAVR vs. SAVR
- 19. 9/30/2016 Norwegian Cardiovascular Disease Registry 19 Cancer Registry – Patient Registry – Death Registry - Sweden Examples
- 20. 9/30/2016 Norwegian Cardiovascular Disease Registry 20
- 21. 9/30/2016 Norwegian Cardiovascular Disease Registry 21 Quality Registry data Examples
- 22. 9/30/2016 Norwegian Cardiovascular Disease Registry 22 Strengths and Weaknesses in Health Registry research
- 23. Strenghts – Population-based research 9/30/2016 Norwegian Cardiovascular Disease Registry 23 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
- 24. Limitations - Population-based research 9/30/2016 Norwegian Cardiovascular Disease Registry 24 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
- 25. 9/30/2016 Norwegian Cardiovascular Disease Registry 25 http://statistikkbank.fhi.no/hkr/
- 26. Alternative to register research 269/30/2016 Norwegian Cardiovascular Disease Registry
- 27. 9/30/2016 Norwegian Cardiovascular Disease Registry 27