Nordic clinical research infrastructure

The Nordic countries have high-quality infrastructure that supports clinical research and trials. The countries have national support functions that provides information and services to researchers that are interested in clinical research – both clinical observational studies and clinical interventional studies.

Some countries also offer one central access point to health data (register data) that may be used in register-based or clinical research. Here you will find support during the process of register-based research, e.g. information on the process of identifying, requesting and using register data in research. Some countries also have metadata level information on the register contents.

The way clinical studies are conducted in the Nordic countries is rather similar, however depending on the type of study, the process and regulatory frameworks may vary. It is therefore necessary to be aware of country-specific requirements.

National Support Functions for Clinical Studies
Health and register data in the Nordic countries

The Nordic countries are well known for their national population-based registers of longitudinal nature with high quality data. Registers are also used in health care to increase the quality of care. Samples from health care and research are stored in biobanks.

Although these data have been collected for other primary purposes (e.g. healthcare or statistics) they may be secondarily used in research. The personal identification number allows linkage of data between registers.

The Nordic countries have identified the great potential in this data and many different national, Nordic and international initiatives have been started to improve the condidions for research utilising these data resources. The processes for getting access to register and health data for research are overall similar in the Nordics, however, national processes apply. If you wish to use Nordic-level data in your research you need to apply for it country-by-country according to national rules and fulfil relevant requirements and safeguards. Nordic projects may be complex to manage and time-consuming.

National websites with information on register and health data:

Denmark
Research Health Data Gateway
Registerforskning.dk

Finland
Findata

Iceland
Statistics Iceland
Directorate for Health

Norway
Helsedata.no

Sweden
Registerforskning.se
RUT Metadata Tool

Ongoing Clinical Trials in the Nordic Countries

There are currently many ongoing clinical trials. More information on how to find studies and how to participate as patient can for example be found on the websites of national support functions for clinical studies.

You may also search for studies in different databases such as The European Union Clinical Trials Register and clinicaltrials.gov and Inclinicaltrials.com.

Denmark

Finland

Iceland

Norway

Sweden

Patient Organisations in the Nordic Countries

There are several patient organisations in the Nordic countries. The following list is not complete.

Do you want to add or update the list, please contact komm@nordforsk.org

Norway

ADHD Norway
Aphasia Association
Anxietyring Norway
Norwegian association for occupational injuries
Norwegian association for Autism
Norwegian Bladder Cancer Association
Norwegian Breast Cancer Association
Norwegian Cerebral Palsy Association
Dyslexia Norway
Norwegian Endometriosis Association
Norwegian Teeth and Health Association
Norwegian Hemophelia Association
Norwegian Fragile X syndrome Association
Norwegian Chronic Pain Association
Norwegian Muscle Disease Association
Norwegian Sleep Disorder Association
Norwegian Association of the Deafblind
Norwegian Association of Foot Deformities
Norwegian Federation of Organizations of Disabled People
Norwegian Association for Parent’s with children with a Disability
HivNorway
Norwegian Hearing Impaired Association
Norwegian Ichthyosis Association
Norwegian Laurence-Moon-Biedl-Bardet Syndrome Association
Norwegian Klinefelter Syndrome Association
Norwegian Cancer Society
Norwegian Association for Persons with Intellectual Disability and relatives
Norwegians substance abuse association
Norwegian Alopecia Areata Association
Norwegian Arthrogryposis Multiplex Congenita Association
Norwegian Amputees Association
Norwegian Heart and Lung Association
Norwegian Huntington Association
Norwegian Symphysis Pubis Dysfunction Association
Norwegian Whiplash Injury Association
Norwegian Kidney and Transplantation Association
Norwegian Obesity Association
Norwegian Polio Association
Norwegian Association for Mental Health families
Norwegian Association for Stroke Affected
Norwegian Personal Injury Association
Norwegian Assocation for victims of violence
Norwegian Digestive Diseases Association
Norwegian Association for unexpected child deaths
Norwegian Association Against Tobacco
Norwegian Spinal Injury Association
Norwegian Liver Association
Norwegian Deafblind Association
Myalgic Encephalomyelitis Network in Norway (Menin)
Norwegian Marfan Association
Norwegian Mental Health Association
Momentum – Norwegian Association for Arm and leg prosthesis users
Norwegian Addison Association
Norwegian Multiple Sclerosis Association
Norwegian Head and Neck Cancer Association
Norwegian Asthma and Allergy Association
Norwegian Asthma and Allergy Association, Section Indoor Climate
The Norwegian Association of the Blind and Partially Sighted – NABP
Norwegian Diabetes Association
Norwegian Deaf Association
Norwegian Fibromyalgia Association
Norwegian Association of Disabled
Norwegian Association of Young Disabled
Norwegian Migraine Association
Norwegian Myalgic Encephalopathy Association
Norwegian Parkinsons Disease Association
Norwegian Whiplash Association
Norwegian association for people with a stoma, reservoir and gastrointestinal cancer
Norwegian Coeliac Association
Norwegian Dysmelia Association
Norwegian Dystonia Association
Norwegian Epilepsy Association
Norwegian Association for Persons with Developmental Disabilities
Norwegian Association for Anal Atresia
Norwegian Association for Bone Marrow Transplant
Norwegian Cystic Fibrosis Association
Norwegian Association for Ehlers–Danlos syndrome
Norwegian Association for fertility and infertility
Norwegian Association for Neurofibromatosis
Norwegian Osteogenesis Imperfecta Association
Norwegian Association of Tuberous Sclerosis
Norwegian Glaucoma Association
Norwegian Haemochromatosis Association
Norwegian Immunodeficiency Association
Norwegian Association for Restricted Growth
Norwegian Association for Stuttering
Norwegian Arthritis Association
Norwegian Lymphoedema Association
Norwegian Osteoporosis Association
Norwegian Patient Association
Norwegian Porphyria Association
Psoriasis and Eczema Association
Norwegian Rheumatism Association
Norwegian Sarcoidosis Association
The Thyroid Association of Norway
Norwegian Tourettes Association
Norwegian Association for Bekhterev Syndrome
Association for Eating Disorders
Norwegian Spinal Association
The Norwegian Association for Spina Bifida and Hydrocephalus
Norwegian Council for Mental Health (NCMH)
Organ Donation Foundation
The Children’s Cancer Society
Turner Syndrome Association in Norway
Disable Youth Association
Foreningen for hjertesyke barn

Finland
Sweden

The Autism and Asperger Association
National Association Balans -for all with experiences of depression or bipolar disorder
The Leukemia Association
Brain Injury Association – Hjärnkraft
Carpa Patient Association
Association for fibromyalgia
HIV-Sverige- National Association for HIV positive
Support Association for Hormonal diseases
Association for mouth and throat cancer
Liver diseases
Association for gastro-intestinal diseases
National Association for stomi operation
National Association for Young Rheumatics
Viking- National Association for Heart and lung transplantation
National Association for patients with Chronic Fatigue Syndrome
Thrombosis
Rare diseases Sweden
Association for schizophrenia
Association for Alzheimer in Sweden
Swedish Anxiety Society
Swedish Aphasia Association
Swedish Association of OCD Ananke
Neuroassociation
Swedish Asthma and Allergy Association
Swedish Ataxia Association
Swedish Back Society
Swedish Coeliac Association
Swedish Cystic Fibrosis Association
Swedish Diabetes Association
Swedish Edema League (SOF)
Swedish Epilepsy Association
Swedish Guillain-Barre Syndrome Support Group
Swedish Heart and Lung Association
Swedish Heart-Children’s Association
Swedish Immunodeficiency Association
Swedish Kidney Association
Swedish Lung Cancer Association Stödet
Swedish Marfan Association
Swedish Migraine Association
Swedish Neurofibrosis Association
Swedish Association for Disabled Children and Young People
Swedish Osteoporosis Association
Swedish Parkinson’s Disease Association
Swedish Prader Willi Syndrome Association
Swedish Psoriasis Association
Swedish Rett Syndrome Association
Swedish Rheumatism Association
Swedish Social and Mental Health Association
The Swedish Addison Association
The Swedish Ehlers-Danlos Syndrome Association
The Swedish Ichthyosis Organization
The Swedish National Association for Families with Hepatitis-B Infected Children
The Swedish Thalidomide Society
National Association for Peripheral Facial Palsy
Thyroid Association in Stockholm

Denmark
Clinical research units

A clinical research unit’s mission is to sustain specialised institutional resources in which clinical investigators can observe and study human physiology as well as study and treat disease with innovative approaches.

There are clinical research units in all Nordic countries. The lists below are not complete.

Do you want to update the lists, for example if you want to add or update a link to a clinical research unit, please contact Maria Nilsson at maria.nilsson@nordforsk.org.

Sweden

Cancercentrum, NUS., Kliniska forskningsenheten i Umeå

Jämtlands läns landsting, Kliniskt forskningscentrum Östersund, Jämtlands läns landsting

Karolinska Universitetssjukhuset Huddinge, Karolinska Trial Alliance – Fas 1

Karolinska Universitetssjukhuset Huddinge, Karolinska Trial Alliance – Support

Karolinska Universitetssjukhuset, Early Clinical Trial Unit, ECTU, Onkologiska kliniken

Karolinska universitetssjukhuset, Huddinge, Klinisk Farmakologisk Prövningsenhet

Karolinska Universitetssjukhuset, Kliniska läkemedelsprövningar, Hudkliniken

Karolinska Universitetssjukhuset, Kliniska prövningsenheten, Röntgen

Landstingen i norra sjukvårdsregionen, Norrlandstingens regionförbund

Landstinget Västmanland, Centrum för Klinisk Forskning , Landstinget Västmanland

Region Östergötland, Linköping Academic Research Centre

Sabbatsbergs sjukhus, Karolinska Trial Alliance – Prim

Skånes universitetssjukhus i Lund, FoU-centrum Skånes Kliniskt Prövningsstöd

Skånes universitetssjukhus i Lund., FoU-centrum Skånes Kliniska Prövningsenhet/Clinical Trial Unit

Sunderby sjukhus, Kliniskt forskningscentrum KFC, Norrbottens läns landsting

Sundsvalls sjukhus, Kliniskt forskningscentrum, Landstinget Västernorrland

Universitetssjukhuset Örebro, Clinical Research Support (CRS) , Universitetssjukhuset Örebro

Uppsala University Hospital, Uppsala Clinical Research Center (UCR)

Vällingby läkarhus, S3 Clinical Research Centers

Västerbottens läns landsting, Clinical Trial Unit,Västerbottens läns landsting

Västerbottens läns landsting, Kliniskt Forskningscentrum, Västerbottens läns landsting

Västra Götalandsregionen, Gothia Forum, Centrum för klinisk prövning/Clinical Trial Center Västra Götalandsregionen, Primary care Trial Center, PTC

Norway

Haukeland University Hospital, Clinical Trial Unit for Adults, Department of Research & Development

Haukeland University Hospital, Clinical Trial Unit for Children, Department of Research & Development

Oslo University Hospital, Clinical Cancer Research Unit, Department of Oncology

Oslo University Hospital/Rikshospitalet, Klinisk Forskningspost, Avdeling for farmakologi

St. Olav Hospital, Clinical Research Facility

University Hospital Northern Norway (UNN), Clinical Research Unit, Clinical Research Centre

Denmark

Aalborg and Aarhus University Hospital, The GCP-unit, Institut for Klinisk Medicin

Aalborg University Hospital, Clinical Trial Unit, Department of Haematology

Copenhagen university hospital, The GCP unit at Københavns Universitetshospital

Herlev Hospital, Klinisk forskningsenhed, Center for Cancer Research, Dept. of Oncology

Odense University Hospital, Hæmatologisk Forskningsenhed (HFE-X), Department of Haematology

Odense University Hospital, The GCP unit, Afdeling for Klinisk Biokemi og Farmakologi

Region Hovedstaden, Kliniske forsøg (One-stop-shop), Enhed for Forskning og Innovation

Rigshospitalet, Copenhagen Trial Unit, Centre for Clinical Intervention Research

Rigshospitalet, Phase 1 Unit, Department of Oncology

Finland

Helsinki University Central Hospital, Clinical Trial Unit, Department of Oncology

Hospital District of Helsinki and Uusimaa (HUS), Clinical Research Institute Helsinki University Central Hospital Ltd. (HYKS-instituutti)

Hospital District of Northern Savo, Science Service Center / Kuopio University Hospital Research Unit

Hospital District of Southwest Finland, Turku Clinical Research Centre

National University Hospitals, Clinical Trials Finland – service portal

Northern Osthrobothnia Hospital District, Oulu University Hospital Research Service Unit

Northern Osthrobothnia Hospital District, Oulu University Hospital Medical Research Center

Pirkanmaa Hospital District, Tays Research Services

Iceland

Landspitali University Hospital, Clinical Research Center

Ethical Review in the Nordic Countries

The provisions for applying for ethical review permits for research involving humans are similar in the Nordic countries, but there are some differences. For all countries, the aim of its national ethics legislation is to protect the individual and respect human dignity in research. Research may be authorised only if the risks it may pose to the health, safety and privacy of research subjects are outweighed by its scientific value. Furthermore, research may be approved only if it is to be carried out by or under the supervision of a researcher who has the necessary scientific competence.

It is important to point out that applications for ethical review need to be made in all countries where the research is carried out. For example, if a study is conducted in two or more Nordic countries, ethical review must take place in each country, if the research in several countries includes elements that require ethical review. Another thing to be emphasized is that the application should be submitted well in advance of the intending start of the research study.

There are several publications where researchers have published lessons learned with regards to ethical review in Nordic projects. However, the most actual information on the ethical review permit process and legislation in the respective countries are found via the national information portals:

Denmark
Nasjonal Videnskabsetisk Komité

Finland
National Committee on Medical Research Ethics (Tukija)

Iceland
The National Bioethics Committee

Norway
De nasjonale etiske komiteene
Regionale komiteer for medisinsk og helsefaglig forskningsetikk

Sweden
Etikprovning.se
Ethics Review Appeals Board