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 
 
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