Research group from TRS
National Resource Center for Rare Disorders
At TRS we generate and distribute knowledge about rare disorders by conducting and participating in research and research networks, both national and international.
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
- Adults with Achondroplasia and their experience with physical activity
- Chronic pain and fatigue in patients with multiple osteochondroma and Ollier disease: A systematic review
- Health-Related Quality of Life in adults with a Skeletal Dysplasia
- Middle-aged and older people with spina bifida myelomeningocele: a 4-year follow-up study
- Nutrition in individuals with skeletal dysplasia
- Pain rehabilitation of patients with a skeletal dysplasia diagnosis
- Psychosocial Aspects in Adults with Familial Thoracic Aortic Aneurysm/Dissection (FTAAD): A Cross-sectional Study on Quality of Life, Challenges in Physical Activity, Education, Work, and Family Life
- Psychosocial aspects of adults with Stickler syndrome; A cross sectional study of quality of life, social aspects, physical functioning and activities in daily life.
- Psychological health and coping in adults with skeletal dysplasia: A digital group-based intervention trial
- The EPLAIN study: Exploring Arthrogryposis Multiplex Congentica in adults in Norway
- The PROPEL Trial
- Work participation in adults with rare diseases: Challenges and possibilities