A5087016529- Neurogenetic and Muscular Disorders Research
- Stroke Rehabilitation and Recovery
- Cerebral Palsy and Movement Disorders
- Family and Disability Support Research
- Balance, Gait, and Falls Prevention
- Energy Harvesting in Wireless Networks
- Congenital Anomalies and Fetal Surgery
- Botulinum Toxin and Related Neurological Disorders
- Spinal Dysraphism and Malformations
- Sarcoma Diagnosis and Treatment
- Optical Imaging and Spectroscopy Techniques
- Childhood Cancer Survivors' Quality of Life
- Occupational Therapy Practice and Research
- Renal and related cancers
Wilhelmina Children's Hospital
2019-2025
University Medical Center Utrecht
2018-2025
Cancer Genomics Centre
2022-2023
De Hoogstraat Revalidatie
2022
American Physical Therapy Association
2018
University of Groningen
2017-2018
University Medical Center Groningen
2017-2018
Nusinersen (Spinraza®) improves survival of infants with hereditary proximal spinal muscular atrophy and motor function in children up to 12 years. Population-based assessments treatment efficacy are limited confined select cohorts patients. We performed a nationwide, population-based, single-centre cohort study younger than 9.5 years at start line reimbursement criteria the Netherlands. assessed age-relevant scores, need for tube feeding, hours ventilatory support documented adverse events....
Bone sarcoma patients face intensive treatment, including life-changing local therapy, which impacts both short- and long-term functioning. Moreover, bone survivors experience the highest burden of adverse events all childhood cancer survivors. To address these issues, we set up a structured multidisciplinary outpatient follow-up clinic for who completed treatment integrated this into standard care. This study protocol describes methodology cross-sectional that aims to systematically report...
People with cerebral palsy are often tired and may complain about fatigue.In this study we describe the development of fatigue over a mean period 3 years.We found that is more or less stable time on group level.On an individual level there can be important changes, both increases decreases in fatigue-related symptoms.We did not find any known risk factors for (for example body mass index, age) to predictive change time.We learned adults CP, who experience fatigue, likely remain fatigued...
Parents of children with spinal muscular atrophy (SMA) often struggle the all-consuming nature demands caring for a child substantial physical needs. Our aim was to explore experiences, challenges and needs parents SMA in COVID-19 pandemic situation.Nineteen 21 (15 months 13 years age) types 1-3 participated semi-structured interviews June July 2020. The were analysed using inductive thematic analysis.Parents mentioned protection health well-being as central perspective driving force during...
Purpose Exploring the impact of contractures in adolescents and young adults (AYA) with spinal muscular atrophy (SMA) on daily functioning participation received contracture management.Methods We included 14, non-ambulant AYA SMA types 2/3 (10 females 4 males), aged 16–30 years. Interviews focused two topics: perceived previous management. used inductive thematic analysis for interview analysis.Results In general, participants experienced muscle weakness to be more a hindrance than...