Tydelig medieprofil for Folkehelseinstituttet
Transcript of Tydelig medieprofil for Folkehelseinstituttet
NORDIC COLLABORATION
USING HEALTH REGISTRIES
HOW CAN WE OVERCOME THE HURDLES? NRI – Bergen - May 5, 2015
Camilla Stoltenberg
Director, Norwegian Institute of Public Health
Professor II, University of Bergen
A few fresh examples Registries, cohorts and biobanks Hurdles and challenges Reflections and proposals
Agenda
A few fresh examples Registries, cohorts and biobanks Hurdles and challenges Reflections and proposals
Agenda
Use og ADHD drugs
Prevalence of ADHD drug use among men and women in 2007 by age group and country of residence.
men
women
Use of ADHD drugs
Findings The 2007 prevalence of ADHD drug use among the
total Nordic population was 2.76 per 1000 inhabitants, varying from 1.23 per 1000 (Finland) to 12.46 per 1000 (Iceland)
Icelanders were nearly five times more likely than Swedes to have used ADHD drugs
Assisted reproductive technology
Study questions: Has the perinatal outcome of children conceived after assisted reproductive technology (ART) improved over time?
Summary answer: The perinatal outcomes in children born after ART have improved over the last 20 years, mainly due to the reduction of multiple births.
ART Registries
Failure rate of hip replacements
The survival of cemented implants for total hip replacement was higher than that of uncemented implants in patients aged 65 years or older.
The increased use of uncemented implants in this age group is not supported by these data.
Nordic Arthroplasty Register Association database
Results
117,347 births from 2009-2010 before, during and after the pandemic: Ca 26 000 (54%) pregnant women were vaccinated. More than 500 stillbirths.
Vaccination did not increase the risk of stillbirth adjusted hazard ratio, 0.88; 95% CI, 0.66-1.17
Pandemic influenza nearly doubled the risk of stillbirth adjusted hazard ratio, 1.91; 95% CI, 1.07-3.41
Vaccination decreased the risk of influenza adjusted hazard ratio, 0.30; 95% confidence interval, 0.25- 0.34
Central Population Registry
•Study population
Infectious disease registry •Positive H1N1 tests •Date of symptom onset
Medical Birth Registry •Birth outcome •Maternal diseases/conditions •Perinatal diagnoses
Vaccination registry •Type of vaccine •Date of vaccination
Prescription registry •Antivirale medication •Other medication
Statistics Norway •Income •Education
Primary care reimbursment database •Influenza •Other diagnoses
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Patient registry •Diagnoses and date
MAY 7: DSF: Data application sent
MAY 27 2010 REK application sent
JUNE 26 REK approval received
JULY 7 REK notification sent
JUNE 10 DT application sent
JULY 8 DSF datafile received
SEPT 29 REK notification approval received
JULY 8 SSB data application sent
DEC 1 SSB datafile prepared for linkage with NorPD
JUNE 22 SYSVAK datafile received
JULY 13 NPR datafile received
OCT 5 MSIS data received
JUNE 14 NPR Data application sent
JULY 2-9 NPR meeting & correspondance about linkage procedure
JUNE 11- MSIS Letter to HOD sent
SEPT 21 MSIS DT approval withdrawn
SEPT 21 MSIS HOD approves H1N1 as group A disease
OCT 20 Preliminary DATA File linked MFR,DSF,MSIS, SYSVAK,NPR
Part 1 Pregnancy: Timeline for permits and access to the various registers
JULY 23 - MSIS Justice Dept sends letter to HOD DT application sent
NOV 5 DT final approval received
Feb 11. NorPD and SSB linked
OCT DT meeting & Correspondance about linkage
AUG - SEPT REK correspondance
Jan 2011 Updated Preliminary DATA file linked MFR,DSF,MSIS, SYSVAK,NPR
Jan Updated MFR data received
JUNE MFR data received
DEC 8 SYSVAK update received
2010
May June July August Sept Oct Dec
2011
March 4
2011
A few fresh examples Registries, cohorts and biobanks Hurdles and challenges Reflections and proposals
Agenda
Infrastructure for research and innovation: Registries, cohorts and biobanks
Registries
Cohorts
Biobanks
Clinical
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Registries in Norway
HEALTH
16 mandatory nationwide
47+ national clinical registrie
OTHER
Social, demographic, economic
Cohorts with biobanks
Participants >500,000 = 10% Population based cohorts with biological samples CONOR - Cohort of Norway >230,000 adults
MoBa - The Norwegian Mother and Child Cohort Study 285,000 children, mothers and fathers Examples of other population and patient cohorts: The Norwegian Twin Registry
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Biobank Norway 9 partners
Helse Sør-Øst
University of Oslo
The Norwegian
Institute of Public
Health (NIPH)
University of Tromsø
Helse Nord
Helse Midt-Norge
NTNU
University of Bergen
Helse Vest
NTNU Kristian Hveem, chair
NIPH Camilla Stoltenberg, co-chair
Five fresh examples Registries, cohorts and biobanks Hurdles and challenges Reflections and proposals
Agenda
Health registries, cohorts and biobanks – 10 challenges
1. Trust is limited 2. Regulations are complicated 3. Organization is fragmented 4. Bureaucracy is increasing 5. Access is cumbersome 6. Important topics and sectors are not included 7. Data are not used 8. Results are not fed back 9. Data capture is separate from clinical recording 10. Technical solutions are proprietary,
unprofessional and/or private
A few fresh examples Registries, cohorts and biobanks Hurdles and challenges Reflections and proposals
Agenda
Population health registries, cohorts and biobanks – 10 advantages 1. Reality-based – when randomised controlled trials are not
possible 2. New methodological approaches based on registries can combine
advantages from RCTs with those from registry-based observational epidemiology (“quasi-experimental methods”)
3. Possibility for longterm follow-up 4. Big numbers and powerful results 5. Unselected – when 100 % are included 6. Many diseases, treatments and risk factors can be evaluated
simultaneously 7. Safe and gentle for participants 8. Protection of privacy- Can secure individual rights 9. Cost effective 10. Basis for other research
Könberg report
3 out of 14 proposals
Registry based research
Establish a Nordic virtual Center for registry based research
Health and technology
Enhanced cooperation on eHealth
Health preparedness
Temporal Distribution of Vaccination and Laboratory-Confirmed Pandemic Influenza.
Håberg SE et al. N Engl J Med 2013. DOI: 10.1056/NEJMoa1207210
Failure rate of hip replacements
Increased use of uncemented hip replacements
Nordic Arthroplasty Register Association database
Assisted reproductive technology
The authors recommend that countries without an established ART register consider to start building up one to ensure safety and quality of ART in the future
ART Registries
Hyperemesis gravidarum
Scandinavian Medical Birth Registries, Cancer Registries, National Patient Registries
Hyperemesis gravidarum
Women who experience hyperemesis gravidarum during pregnancy may have an altered risk of cancer later in life, but results have been inconsistent.
In this large case-control study, the authors found that hyperemesis was inversely associated with lung, cervical, rectal, and overall cancer risk.
However, the condition was also associated with an increased risk of thyroid cancer.
These results suggest that further research is needed in order to identify potential mechanisms for these associations, as hyperemesis is one of the most common complications of early pregnancy.
Scandinavian Medical Birth Registries, Cancer Registries, National Patient Registries
Hyperemesis gravidarum
The study provides valuable insight into the potential long-term consequences of hyperemesis, but needs to be confirmed in other populations before conclusions can be drawn.
Scandinavian Medical Birth Registries, Cancer Registries, National Patient Registries
Mortality and mental disorders
Danish and Finnish national hospital registers, national cause-of-death registers, Danish Psychiatric Central Register, Finnish Hospital Dischrge Register
Mortality and mental disorders
The mortality gap between people with severe mental disorders and the general population is decreasing
However, this can easly be offset by selective disadvantages:
Deep Finnish recession in the 1990s
Excessive long-term hospitalisation of people with mental disorders in the 1950s to 1970s
Danish and Finnish national hospital registers, national cause-of-death registers, Danish Psychiatric Central Register, Finnish Hospital Dischrge Register
Mortality and mental disorders
Danish and Finnish national hospital registers, national cause-of-death registers, Danish Psychiatric Central Register, Finnish Hospital Dischrge Register
1. The Norwegian Cause of Death Registry
2. The Medical Birth Registry of Norway
3. The Norwegian Cardiovascular Disease Registry
4. The Norwegian Surveillance System for Communicable Diseases and Tuberculosis Registry
5. The The Norwegian Immunisation Registry
6. The Norwegian Surveillance System for Resistance against Antibiotics in Microbes
7. The Norwegian Surveillance System for Infections in Hospitals
8. The Norwegian Prescription Database
9. Registry for induced abortion
10. The Cancer Registry of Norway
11. The Newborn Screening Registry
12. The Norwegian Patient Registry
13. The Norwegian Information System for The Nursing and Care Sector
14. ePrescription
15. The Registry of the Norwegian Armed Forces Medical Services
16. The Norwegian Health Archives
16 National Health Registries
47 National Medical Quality Registries
Cardiovascular Stroke
Heart infarction
Vascular surgery
Heart surgery
Pacemaker and ICD
Heart failure
Intensive cardiology
Cardiac arrest
Cancer Colorectal cancer
Prostate cancer
Childhood cancer
Breast cancer
Melanoma
Gynecologic cancer
Lung cancer
Lymphoma and Chronic lymphocytic leukemia
Respiratory Cronic Obstructive Pulmonary Disease (COPD)
Long term mechanical ventilation
Diabetes Child and youth diabetes
Diabetes in adults
Nervous system Cerebral palsy
MS
Hereditary and congenital neuromuscular diseases
Dementia
Muscle, bone and connective tissue Arthroplasties
Hip fractures
Cruciate ligaments
Back surgery
Neck and back pain
Arthritis
47 National Medical Quality Registries
Stomach and intestinal Anal incontinence
Gasteroenterology
Gynecology and birth Gynecological endoscopy
Female urinary incontinence
Kidney Nephrology
Kidney biopsy
Intensive care Intensive care
Neonatal medicine
Trauma
Infections HIV
Rehabilitation Deafblindness
Spinal cord injury
Immune diseases Organ-specific autoimmune diseases
Skin Hidradenitis
Others Pain
Cleft lip and palate
Porphyria
Registries - other
The National Population Register
The National Insurance Scheme
Country of origin file
Primary care reimbursment data (KUHR/HELFO)
Information on primary care services
Education, income, occupation and other sociodemographic data
Main hurdles and challenges
Trust
Societal
Individual
Usefulness
Understanding of the need for research and innovation
Main hurdles and challenges
Regulation In each country In the EU
Technical solutions Confidentiality and information security Control and access for each inhabitant and other users
Organization Fragmented system Disconnected from routine information system
Ownership and rights Institutional, commercial and personal «ownership»
to data/registries