National Resource Center for Rare Disorders

Our research is guided by questions from service users and their peers, clinicians, other relevant services (e.g. the school/educational systems, the Norwegian labor and welfare administration (NAV), etc), and systematically includes non-governmental organizations (NGOs). Our goal is to conduct and collaborate in research that benefit the users of our services. 

Background

Specialist for physical medicine and rehabilitation with experience as Head physician in both an outpatient department and a rehabilitation hospital including responsibility for both personnel, strategy and budget. Organizer of several studies on master athletes evaluating changes in bone density and muscle power with age that peaked in a PhD. Currently leading a project about pain rehabilitation for patients with skeletal dysplasia, conducting a review on pain and fatigue in to skeletal dysplasia diagnosis and involved in other projects about pain, rehabilitation and skeletal dysplasia. Strong interest in rehabilitation, pain research and guidelines methods.

Main topics/focus areas

Our main topics are research on the following rare disorders: rare, congenital skeletal- and connective tissue disorders, spina bifida and limb deficiency. Several methodological challenges are present in research on rare congenital disorders, thus contributing to the development of relevant methods becomes a simultaneous focus. Our research includes primary and secondary studies:

• Epidemiological studies
• Registry studies
• Qualitative studies
• Mixed-methods studies
• Systematic reviews   

Research projects