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Treatment of Ectopic Mineralization in Pseudoxanthoma Elasticum.

The main objective is to determine if bisphosphonate therapy with etidronate leads to stabilization or attenuation of ongoing calcification in the leg arteries as quantified by 18F-sodium fluoride(18F-NaF) PET-CT imaging in patients with PXE.…

Microvolt T-Wave Alternans in Adults with Congenital Heart Disease: a Predictor of Ventricular Arrhythmias

Primary Objective: to determine the prevalence of MTWA in adults with congenital heart disease who are deemed to be at high risk for ventricular arrhythmias and sudden cardiac death.Secondary Objective(s): • to describe the clinical usefulness and…

Ga-68-DOTA-(RGD)2 PET/CT: imaging angiogenesis in patients with low-flow vascular malformations

The primary objective of this study is to measure whether αvβ3 integrin expression and tracer uptake values of 68Ga-DOTA-(RGD)2 change in patients with (recurrent) low-flow vascular malformations after embolization therapy.

Pulse oximetry screening for critical congenital heart disease and relevant newborn pathology in the Netherlands

To assess the accuracy and cost-effectiveness of PO screening for CCHD in the Dutch perinatal care system.

Creation of disease model systems to understand and correct genetic diseases through gene or other therapy using iPS cells derived from somatic cells: *the iPS study*
Addendum A: "Informatie voor proefpersonen en bijbehorend toestemmingsformulier voor de vervaardiging en het gebruik van geïnduceerde Pluripotente Stamcellen (iPS cellen) voor patiënten met een cardiovasculaire aandoening."

Primary Objective: to derive iPSCs from patients with a variety of diseases caused by genetic mutations or genetic predisposition to disease or of unknown origin. The cells will be propagated and differentiated into a variety of somatic cell types…

Pharmacokinetics and pharmacodynamics of drugs in neonates and children during Cardiopulmonary Bypass.

This study is aimed at determining pharmacokinetics and pharmacodynamics of medications routinely used at the Erasmus Medical Centre in pediatric cardiac surgery during and after cardiopulmonary bypass. The goal is to be able to formulate evidence…

TLA Technology: a new DNA diagnostic test to sequence genes that cause the disease and detect new mutations: proof of concept study voor patients with Rendu-Osler-Weber disease.

1. Validation - of an independent geneset - of TLA technology as a new DNA diagnostic test for complete sequencing of selected genes.2. The search for structural chromosome changes in patients with ROW disease who where tested negative for mutations…

Cardiomyopathy Registry Study-II (CARS-II):
Dilated cardiomyopathy in children. Improving diagnosis by state-of-the-art
genotyping and outcome by risk stratification and by optimizing
pharmacotherapy

The Cardiomyopathy Registry Study (CARS)-II aims to1) Create a national cohort with biorepository of patients with paediatric DCM2) To elucidate (epi) genetic causes of iDCM in a uniform and state of the art way.3) Identify clinical risk factors for…

Pulse oximetry screening for congenital heart disease in community based midwifery care in the Netherlands; a feasibility study

To investigate whether it is feasible to perform a large national implementation study in which community based midwives in the Netherlands use a pulse oximeter for screening newborns for CHD.

Feasibility of heart rhythm sensing, pacing and defibrillation with an ICD lead in an alternative position

(1) to determine the feasibility to sense and pace the myocardium with an- ICD lead placed in an alternative position (2) to determine the best position for pacing and sensing in the alternative position(3) to determine the safety and feasibility to…

A prospective, multicenter, open-label extension of FUTURE 3 to assess the safety, tolerability and efficacy of the pediatric formulation of bosentan two versus three times a day in children with pulmonary arterial hypertension

To evaluate the long-term safety, tolerability and efficacy of the pediatric formulation of bosentan two versus three times a day in children with pulmonary arterial hypertension (PAH).

Bosentan improves clinical Outcome of adults with congenital heart disease or mitral valve lesions who undergo CArdiac surgery

To investigate whether an endothelin-1 receptor antagonist improves exercise capacity (peak V*O2) in adults with CHD or with mitral valve lesions who undergo cardiac surgery.

Multisite Near-infrared spectroscopy monitoring in newborn infants at risk of circulatory failure

The primary goal of this study is to determine if the use of multi-site NIRS-monitoring in newborn infants at risk of circulatory failure could lead to a better diagnosis, treatment and outcome in these infants compared to the use of conventional…

Spatio-Temporal Image Correlation; the Key to fetal EchocaRdiography
Part III signs of decompensation in growth-restricted fetuses

The focus of this study is to get more insight in the pathophysiology of IUGR. The main goal is to investigate the applicability of STIC in determining fetal cardiac function in IUGR.

Translating biomarkers from animal models to the clinic: validating assays in healthy volunteers.

The aim of our study is to identify the same 4 circulating analytes identified in the animal models in human subjects. An additional task will be to measure the basal levels and the inter-individual variability.

Multicenter, double-blind, placebo-controlled, randomized, prospective study of bosentan as adjunctive therapy to inhaled nitric oxide in the management of persistent pulmonary hypertension of the newborn (PPHN)

To assess the efficacy of bosentan in neonates with persistent pulmonary hypertension of the newborn (PPHN) who are in need of continued inhaled nitric oxide (iNO) after at least 4 hours of continuous iNO treatment and to evaluate the…

Phase 2a, Double-Blind, Placebo-Controlled, 2-Period, 2-Treatment, Crossover Study to Evaluate the Safety, Efficacy and Pharmacokinetics of Multiple Oral Doses of XPF-001 (400 mg bid) in Patients with Inherited Erythromelalgia

• To evaluate the safety and efficacy of multiple doses of XPF-001 (400 mg bid) for relief of pain in patients with IEM.• To evaluate the efficacy of multiple doses of XPF-001 (400 mg bid) for relief of vasomotor signs in patient with IEM.• To…

The relationship between depressive symptoms and pro-inflammatory cytokine serum levels in adults with congenital heart disease

The current pilot-study will examine the relation between depressive symptoms and serum levels of pro-inflammatory cytokines in CHD-patients.

Heart failure in children with cardiomyopathy. Which markers can be used to predict outcome?

Primary - to determine factors that predict outcome in children with symptomatic heart failure secondary to cardiomyopathy, in order to choose an optimal management strategy for these children. Secondary - to identify predictive factors that can be…

Randomized controlled trial of mindfulness training as complementary therapy in adults with structural heart disease

Objective of this study is to determine (1) whether mindfulness training has an additional clinical and psychological effect to standard care, and (2) whether offering mindfulness training is a cost-effective intervention, in adult patients with…