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A 5-year Natural History Study in LAMA2-related muscular dystrophy and SELENON-related myopathy: the extended LAST STRONG Study

With the extended LAST STRONG Study, we aim to (1) collect 3-year and 5-year natural history data, (2) implement the natural history data collection into clinical care and international guidelines (reach trial readiness), and (3) do in-depth…

A randomized-controlled trial investigating the effects of a magic-based intervention in children undergoing catheter-based ablation.

The primary objective is to investigate the efficacy of a magic-based intervention in alleviating short-term self-reported distress in children (7-18 years of age) undergoing catheter-based ablation for cardiac arrhythmias on the day of the…

Metabolic syndrome and vascular damage in relation to accelerated aging in survivors of hematopoietic stem cell transplantation for hematological malignancy.

To study in two national cohorts of HSCT survivors, treated in different time periods, the prevalence and risk factors of metabolic syndrome, endothelial dysfunction (as a sign of vascular damage) and the clinical phenotypes of accelerated aging so…

A Prospective, Observational, Basket, Comprehensive Cohort Study of Children and Adolescents Aged Less Than 18 Years with Anemia Associated with Chronic Kidney Disease Requiring or Not Requiring Dialysis.

Primary:Evaluate the impact of SoC anemia management on Hgb concentrationsSecondary:- Characterize the use of ESA therapies in management of anemia associated with moderate to severe CKD in children and adolescents aged <18 years- Evaluate…

Comprehensive assessment of the long-term effects of necrotizing enterocolitis and its treatment

To determine the long-term outcome after necrotizing enterocolitis during neonatal life, regarding (pain) sensitivity, sensory processing, behaviour, executive function, scar satisfaction (in surgically treated NEC patients), and (health-related)…

Neurodevelopmental Outcomes and Morbidities of Moderate and Late Preterm Children at the Age of 9 Years - The Alkmaar MLPTI Cohort Study

To examine cognition, motor function, executive functions, speech and language development, behaviour, psychosocial functioning, academic achievement, physical morbidities and growth of MLPTI at the age of 9 years and correlate this with BSID-III-NL…

A multi-center, non-randomized study to characterize biomarkers in cerebrospinal fluid (CSF) of patients with infantile-onset (IOPD) or late-onset Pompe disease (LOPD)

To evaluate Hex4 concentrations in CSF from patients with infantile-onset (IOPD) and late-onset (LOPD) Pompe disease

Power2Walk: The Impact of Functional Power Training on Participation and Activity in Children with Cerebral Palsy - A Randomized Controlled Trial.

Primary:1. Do twelve weeks of MegaPower training effectively accomplish patient-tailored participation and activity goals in ambulant children with CP, when compared to their usual care? Secondary:1. Do twelve weeks of MegaPower training improve…

Long-term neurodevelopmental outcome after perinatal arterial ischemic stroke

The main goal of this study is to determine motor, cognitive, behavioral, executive, and language functioning of children with PAIS at school age. Furthermore, we will analyze the effect of PAIS on brain growth, development, and connectivity using…

Effectively intervening in traumatized parents and children after structural domestic violence: A multiple baseline analysis

The goal of this study is to evaluate the effectiveness of an individualized treatment trajectory in which the order of trauma therapy for the parent, trauma therapy for the child and attachment-based therapy is tailored towards the complex needs of…

Differences in Information-Seeking Behavior Between Typically-Developing Children and Children with Autism Spectrum Disorder

The main objective of this study is to investigate whether there are differences in the way factors such as learning progress (LP) maximization and prediction error (PE) minimization drive the exploratory behavior of children with autism compared to…

Trial readiness and fitness for congenital myopathies: A 2-year prospective natural history study including a cross-sectional study on muscle fatigability

Part 1: Assess the natural disease course of three congenital myopathies during 24 months. This will enable us to obtain a detailed assessment of the phenotype and genotype, evaluate and optimize the current care, determine the rate of disease…

Immunological response after early extra and regular MMR immunization; 10 years follow-up

Primary Objective: - To assess the effect of MMR-0 vaccination on the humoral immunity against measles 2 years (+/- 2 months) after MMR-2 vaccination.Secondary Objective(s): - Determine the effect of MMR-0 vaccination on the humoral immunity against…