Nordic Skeletal Dysplasia Council
Nordic Skeletal Dysplasia Council aims at promoting and coordinating clinical trials for patients with rare skeletal dysplasia in the Nordic Countries to advance medical science and improve patient outcomes.
Nordic cooperation for better patient care
Nordic Skeletal Dysplasia Council is part of the Nordic Skeletal Dysplasia Association.
Background
The Nordic countries, which include Denmark, Finland, Iceland, Norway, and Sweden, offer a unique platform for conducting clinical trials due to their well-established healthcare systems, high-quality research infrastructure, and patient-friendly regulatory environment.
Here are some of the key reasons for pharmaceutical or medical companies to select the Nordic Countries for medical research and clinical trials:
1. High-quality healthcare systems
The Nordic countries have some of the best healthcare systems in the world, with universal coverage and access to care for all residents. This ensures that clinical trials can recruit a diverse patient population with various medical conditions.
2. Large total population
Even though the individual countries have a rather small number of inhabitants, the total population of the Nordic countries is large with approximately 27.5 million (2021 data). Here is a breakdown of the population by country:
- Denmark: 5.8 million
- Finland: 5.5 million
- Iceland: 0.4 million
- Norway: 5.4 million
- Sweden: 10.4 million
3. Efficient regulatory processes
The regulatory environment in the Nordic countries is patient-friendly and efficient, with streamlined processes for approving and conducting clinical trials. This makes it easier for researchers to start trials quickly and enroll patients efficiently.
Strong research infrastructure: The Nordic countries have a strong research infrastructure, including world-renowned research institutions, hospitals, and clinics. This infrastructure supports clinical trial research and ensures high-quality data collection and analysis.
4. Highly educated and engaged patient population
The Nordic countries have a highly educated and engaged patient population that is willing to participate in clinical trials. This is essential for successful clinical trial recruitment and retention.
5. High-quality data
Nordic countries have extensive health registries that provide high-quality data for clinical research. These registries can facilitate research in areas such as drug safety and efficacy, as well as identify potential study participants.
In summary, the Nordic Skeletal Dysplasia Council offer an ideal platform for initiating clinical trials in the Nordic countries.
Council members
Norway
- Svein O. Fredwall (secretary), TRS National Resource Centre for Rare Disorders, e-mail: svfred@sunnaas.no
- Henrik U. Irgens, Haukeland University Hospital, e-mail: henrik.underthun.irgens@helse-bergen.no
Denmark
- Hanne B. Hove, Rigshospitalet, Kopenhagen, e-mail: hanne.buciek.hove@regionh.dk
- Merete Ljungberg, Rigshospitalet, Kopenhagen, e-mail: merete.ljungberg@regionh.dk
- Pernille Axèl Gregersen, Århus University Hospital, e-mail: perngreg@rm.dk
Sweden
- Giedre Grigelioniene, Karolinska, Stockholm, e-mail: giedre.grigelioniene@ki.se
- Ola Nilsson, Karolinska, Stockholm, e-mail: ola.nilsson@ki.se
Finland
- Outi Mäkitie, Helsinki University Hospital, e-mail: outi.makitie@helsinki.fi
- Helena Valta, Helsinki University Hospital, e-mail: Helena.Valta@hus.fi
- Matti Hero, Helsinki University Hospital, e-mail: matti.hero@hus.fi
External advisor
- Ravi Savarirayan, Murdoch Children’s Research Institute, Melbourne, e-mail: ravi.savarirayan@mcri.edu.au
Steering committee
- Svein Fredwall (Norway), secretary
- Merete Ljungberg (Denmark)
- Giedre Grigelioniene (Sweden)
- Helena Valta (Helsinki)
The steering committee will then decide on when the Core Group should be invited for further discussions.