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Side 63, veikartet vollset - health registries for research – university of bergen & norwegian institute of public health slide 1.

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Presentasjon om: "Side 63, veikartet vollset - health registries for research – university of bergen & norwegian institute of public health slide 1."— Utskrift av presentasjonen:

1 Side 63, veikartet vollset - health registries for research – university of bergen & norwegian institute of public health slide 1

2 vollset - health registries for research – university of bergen & norwegian institute of public health slide 2

3 3. august 2011 Problemstillinger: -Narkolepsi ? -Svangerskaps-komplikasjoner ? vollset - health registries for research – university of bergen & norwegian institute of public health slide 3

4 Folkeregisteret (DSF) Basis for kopling/sivilstand MSIS H1N1-status Fødselsregisteret (MFR) Fødselsutfall, sykdommer hos mor SYSVAK Vaksinasjon, dato Reseptregisteret (NorPD) Antiviral medikasjon Statistisk sentralbyrå Inntekt, utdannelse Pasientregister diagnoser KOPLET DATAFIL (hos koplingsinstans, for eksempel SSB, MFR) Personidentifiserbar (fnr) FORSKNINGSFIL uten person-id (fnr) Potensielt stort antall variabler, individer Anonym (på forskerens hånd) Avidentifisert REGFLU vollset - health registries for research – university of bergen & norwegian institute of public health slide 4

5 HVORFOR REGISTRE ? vollset - health registries for research – university of bergen & norwegian institute of public health slide 5

6 Kunnskap og gode data om sykdom og helseforhold om faktorer som gir dårlig helse / god helse til nytte for befolkning, pasienter, forvaltning og forskning Skånsom forskningsmetode (for deltakernes del) Helseregistre gir anledning til å følge pasienter over lang tid – viktig for vollset - health registries for research – university of bergen & norwegian institute of public health slide 6

7 Norske artikler i New England Journal of Medicine Søk i Pub Med: norway[Affiliation] AND n-engl-j-med[Journal] 20 treff (1 er senere «retracted», 1 er «sounding board» uten humane data) 18 original-artikler gjenstår – 1 er en observasjonsstudie av hepatitt C infeksjon blant pasienter som fikk immunglobuliner, 1 er en studie av assay for troponin T i et materiale fra en randomisert studie blant hjertekar-pasienter, 1 er en randomisert studie med n-3 fettsyrer til psoriasis-pasienter – 5 er randomiserte studier blant hjertekar-pasienter – 10 av 18 artikler er basert på Medisinsk fødselsregister, Kreftregisteret, Dødsårsaksregisteret eller koplinger til disse registrene for utfallsmål vollset - health registries for research – university of bergen & norwegian institute of public health slide 7

8 Nordisk tradisjon «The Nordic model» De nordiske land er modell-samfunn for en velferdsstat med relativt mindre ulikhet, universell adgang til utdannelse, helsetjenester og sosiale ytelser En mindre vektlagt særtrekk ved disse landene er nasjonale, alle-omfattende helseregistre, som det er tradisjon for (og f.eks. i Norge lovhjemmel) kan benyttes til forskning vollset - health registries for research – university of bergen & norwegian institute of public health slide 8

9 Utvalgte nasjonale nordiske helseregistre‡ RegisterDanmarkFinlandNorgeSverige Dødsårsaksregister Medisinsk fødselsregister Pasientregister (sykehus- opphold) 1967 (1977*) (1987*) Kreftregister Reseptregister ‡ Elektronisk lagret personidentifiserbar (evt pseudonymisert) informasjon * Landsdekkende fra året i parentes. Fra Vollset & Cappelen. Registerepidemiologi. I Laake et al. Epidemiologiske og kliniske Forskningsmetoder. Gyldendal Akademisk 2007 [korrigert i forhold til original tabell] vollset - health registries for research – university of bergen & norwegian institute of public health slide 9

10 Norwegian Research Council (NRC) Research infrastructure call - scientific databases and collections Health Registries for Research National infrastructure for health registries research – /F50 revised august 2011 Partners and network: University of Bergen, Norwegian Institute of Public Health, University of Tromsø, University of Science and Technology, University of Oslo, Northern Regional Health Authority, Center for Clinical Documentation and Evaluation (SKDE), Central Regional Health Authority, Western Regional Health Authority, South-Eastern Regional Health Authority, Norwegian Knowledge Centre for the Health Services, Norwegian Patient Registry vollset - univ. bergen - norwegian research council 17 february 2012: seminar on infrastructure for research data slide 10

11 Health registries for research is one of the three pillars of a complete national infrastructure for medical research Improved registry infrastructure essential for optimal utilization of Norwegian population based health studies and biobanks The combination of clinical and population based biobanks, national health registries and large population based cohorts provides a unique research infrastructure internationally Biobanks, health registries, cohorts vollset - univ. bergen - norwegian research council 17 february 2012: seminar on infrastructure for research data slide 11

12 VISION Establish internationally competitive research and research documentation service based on Norwegian health registries Key elements of the new infrastructure are timeliness, access, quality of data and metadata, and linkage standards for national health and clinical registries vollset - univ. bergen - norwegian research council 17 february 2012: seminar on infrastructure for research data slide 12

13 AIMS establish network for national health registries research infrastructure (the 4 major universities, all regional health authorities, Norwegian Institute of Public Health, Norwegian Knowledge Center for the Health Services, Norwegian Patient Registry participated in application) improved privacy protection and data security support for statistical analyses and design of registry-based studies secure access for outside researchers (remote logon) improved quality of linkage between registries improved access to disease outcome data for health surveys and biobanks improved management of family linkage information support for disease and occurrence mapping - GIS resources vollset - univ. bergen - norwegian research council 17 february 2012: seminar on infrastructure for research data slide 13

14 Why is the infrastructure 'Health Registries for Research' necessary? Access to registry data for research is too complex and time- consuming, and researchers spend their time on obtaining data instead of analysing and publishing Responsibilities for health registries in Norway are shared among several central institutions and are distributed regionally. This is unfortunate for health research. Efficient utilisation of the combined resources for research purposes requires coordination and networks for cooperation and standardisation ‘Health Registries for Research’ will focus on the scientific use and the needs of academic users of Norwegian health registries vollset - univ. bergen - norwegian research council 17 february 2012: seminar on infrastructure for research data slide 14

15 National (central) health registries Start year Responsible institution Cause of Death Register1925/1951NIPH* The Medical Birth Registry of Norway (MBRN)1967NIPH Register for Pregnancy Terminations (Abortion)1979/2007NIPH Surveillance System for Communicable Diseases (MSIS)1977NIPH The Tuberculosis Registry1962NIPH The Childhood Vaccination Register (SYSVAK)1998NIPH Surveillance System for Resistance against Antibiotics in Microbes (NORM) 2003NIPH The Norwegian Surveillance System for Infections in Hospitals (NOIS) 2005NIPH The Norwegian Prescription Database (NorPD)2004NIPH The Norwegian Cardiovascular Disease Registry2010NIPH The Cancer Registry of Norway1952S-E RHA ** The Norwegian Patient Registry (NPR)1997/2007Dir. Health The Norwegian Information System for The Nursing and Care Sector (IPLOS) 2005Dir.Health ePrescription Database2008Dir. Health The Health Registry of the Armed Forces2005Min. Defense *Norwegian Institute of Public Health ** Regional Health Authority vollset - univ. bergen - norwegian research council 17 february 2012: seminar on infrastructure for research data slide 15

16 National clinical registries (medical quality registries) South-Eastern Regional Health Authority 1.Child and juvenile diabetes 2.Neonatal medicine 3.Cerebral palsy 4. Trauma 5. Colorectal cancer 6. Prostate cancer Western Regional Health Authority 1.Intensive care 2.Diabetes in adults 3.Cleft lip and palate 4.COPD (KOLS) 5. Arthroplasties 6. Hip fractures 7. Cruciate ligaments 8. Multiple sclerosis Central Regional Health Authority 1.Myocardial infarction 2.Cerebral stroke 3. Vascular diseases/vascular surgery Northern Regional Health Authority 1.Back surgery2. Hereditary and congenital neuromuscular diseases vollset - univ. bergen - norwegian research council 17 february 2012: seminar on infrastructure for research data slide 16

17 WP Work packages Responsible partners 1 Preparing national (central) registry data for research NIPH -Bergen, UoT 2 Biostatistics support service UoB, NIPH, NHH, Uo0 3 Data security implementation and support service UoB 4 National standard for registry data documentation UoT 5 Research support for coordination with quality registries for cardiovascular disease NTNU/SKDE/ HM 6 Coordination of utilization of data from the national medical quality registers for research purposes SKDE 7 Utilization of national hospital discharge and quality of care data NOKC 8 Data from the Norwegian Patient Register for research NPR 9 Management and coordination UoB/NIPH vollset - univ. bergen - norwegian research council 17 february 2012: seminar on infrastructure for research data slide 17

18 What the infrastructure is not Not computing intensive* Not storage intensive BUT requires safe environment for sensitive data Possible collaboration with Global burden of disease project – Ensemble modelling (bla Bayesian model averaging – 600 timer på 5000 Gflops cluster) Foreman et al. Pop Health Metrics 2012 vollset - univ. bergen - norwegian research council 17 february 2012: seminar on infrastructure for research data slide 18

19 Key challenges Data security and privacy protection. Safe storage, linkage, transport of data (encryption systems) Standardisation and documentation of registries and complex administrative systems across institutions and regions - METADATA Improved support for study design and statistical analysis Efficient linkage of registries and access to research data (without personal identifiers) – legal and regulatory issues vollset - univ. bergen - norwegian research council 17 february 2012: seminar on infrastructure for research data slide 19

20 Side 63, veikartet vollset - health registries for research – university of bergen & norwegian institute of public health slide 20


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