Tydelig medieprofil for Folkehelseinstituttet

Folkehelseinstituttet Camilla Stoltenberg

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


Agenda

Use of ADHD drugs

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

ART Registries


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

Nordic Arthroplasty Register Association database


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.


Pandemic Influenza

Analysis

Causes??

Stillbirth

Narcolepsy,

ADHD, ASD,

other

Influenza

Vaccine

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


Agenda

Infrastructure for research and innovation: Registries, cohorts and biobanks

Registries

Cohorts

Biobanks

Clinical

18

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


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

Research and innovation for health • Faster • More • Better

Vision

THANK YOU!

30

In Sweden, Denmark, Finland, Iceland, Norway and a few other places

March 2000

The key

Personal Identification Number

Temporal Distribution of Vaccination and Laboratory-Confirmed Pandemic Influenza.

Håberg SE et al. N Engl J Med 2013. DOI: 10.1056/NEJMoa1207210


Increased use of uncemented hip replacements



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


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.



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.


Mortality and mental disorders

Danish and Finnish national hospital registers, national cause-of-death registers, Danish Psychiatric Central Register, Finnish Hospital Dischrge Register


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




Analysis

Cohorts

Biobanks

Population

Registries

Clinical

Diseases

time

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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

Research and innovation for health

• Faster – in real time

• More – cover the whole health care system and link with other systems, increase capacity for analysis

• Better – structured information, simple access, new methodological approaches

Vision

Documents

Tydelig medieprofil for Folkehelseinstituttet