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 cooperat​​ion for ​​​​better patient care

​Nordic Skeletal Dysplasia Council is part of the Nordic Skeletal Dysplasia Association.

​Bac​​k​​​g​​​​round 

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. Hi​​​​​gh-qual​ity healthc​​are 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. Lar​​ge tot​a​l 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. Efficie​​​​n​​t 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. Hig​​​hly 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. 

​​​Co​un​​​cil members​

No​r​​way

  • ​​​​Sve​​in 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​

De​n​mark

  • ​​​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​

​Sw​eden

  • ​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
  • ​Hele​na Valta, Helsinki University Hospital, e-mail: Hele​na.Valta@hus.fi
  • ​Matti Hero, Helsinki University Hospital, e-mail: matti.hero@hus.fi

​​​​Externa​l 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 meet digitally twice a year and on demand, and will handle incoming requests and other relevant issues and decide on how to address them.

The steering committee will then decide on when the Core Group should be invited for further discussions.

Relate​​d information


What is TRS?

TRS is a national resource center for rare, congenital skeletal- and connective tissue disorders, Spina Bifida and limb deficiency. The users of the center are people affected by the disorders, their families, health personnel and other professionals working with this group. TRS is a part of the Norwegian National Resource Services on Rare Disorders (NKSD) and is located at Sunnaas Hospital in Nesodden, near Oslo, Norway.
Learn more about TRS
Bilde fra Sunnaas, utendørs
Sist oppdatert 19.04.2023