Research projects

Nor-SMA - The safety and efficacy of nusinersen in Norwegian pediatric patients with Spinal muscular atrophy (SMA). PI Sean Wallace
Adults with SMA-follow up of treatment with nusinersen. PI Trine Haug Popperud.
Symptoms, outcome measures and treatment of upper limb function in Myotonic Dystrophy type 1. PhD project. The project consists of three substudies;
1) Translation, reliability and validity of the Norwegian version of ABILHAND-NMD and ACTIVLIM for people with Myotonic Dystrophy type 1. Published in July 2023
2) Symptoms and Outcome Measures for Upper- Limb Function in Myotonic Dystrophy Type 1 (SOUL-DM1). Symptoms and Outcome Measures for Upper- Limb Function in Myotonic Dystrophy Type 1 - Full Text View - ClinicalTrials.gov. Data collection will be finalized in 2024. PI Kristin Ørstavik
3) Technology Assisted Rehabilitation for Upper Limb Function in Myotonic Dystrophy Type 1 (Technorehab). Technology Assisted Rehabilitation for Upper Limb Function in Myotonic Dystrophy Type 1 - Full Text View - ClinicalTrials.gov. Data collection is finalized in 2023. PI Hilde Robinson
Recovery post resistance exercise in DM1-patients-collaboration with National School of Sports PI professor Truls Raastad.
Heart transplantation due to cardiomyopathy– causes including hereditary neuromuscular disorders-The Heart-Musc-study. PhD-project. PI Kristin Ørstavik
Hypokalemic periodic paralysis – impact of dietary intake and physical activity. PI Marianne Nordstrøm.
Health literacy and self-efficacy in persons with rare disorders and their family caregivers – a nation-wide multicentre study (HL-RARE)-Frambu responsible, collaboration with other Centers for Rare disorders
CMT and physical activity- a qualitative study. PI Kristin Ørstavik
Explain-AMC – in collaboration with TRS, Sunnaas Hospital
Pregnancy and Neuromuscular disorders-in collaboration with Haukeland University Hospital
Personalised Training for People with Rare Neuro Muscular Disorders- PETRA-NMD – a national project on the effect of exercise on muscle function and balance in three different NMD. PI Kristin Ørstavik