24 results
Optimalisation of genetic counseling for patients with breast cancer, by also making use of other ways to provide information than the personal consultation.
To get insight in the long term results (mortality, morbidity and cardiologic function) of patients with congenital heart disease operated at young age. To compare whether the changes in surgical techniques have resulted in an increase of (…
The main objective of this research is to contribute to the elimination of disparities in care between Dutch and non-Dutch kidney patients where living donation is concerned. The primary objective is evaluating the effectiveness of an intervention…
1. Developing novel approaches to determine the clinical significance of UVs. 2. Developing new clinical guidelines and implement them into clinical practice.
Engelse tekst volgt indien onderzoeksvoorstel definitief moet worden voorgelegd aan de METC (in overleg met mevrouw Lilian Damen).
To identify factors that have an influence on the reproductive decision-making for a subsequent pregnancy of women having a child with congential anatomical anomalies.
The objective of the research is to examine the perspective of adults with Cystic Fibrosis concerning sexuality and to examine which factors are of influence, so that we 1.) acquire insight in giving meanings and perception of sexuality in the…
Evaluation of long-term complaints and problems on medical, surgical, psychological, social-emotional, conditional and motoric area in patients with one or multiple congenital malformations. More knowledge on long-term morbidity will lead to better…
The main research questions are:1a. What are the functional status on all levels of ICF and quality of life of adults with DMD?1b. What are determinants of functional status and quality of life?2a. What are burden of care and quality of life of…
We want to investigate if it is possible to set up the entire process of home mechanical ventilation outside the hospital. This means practically that the patients will not be admitted to the hospital. The goal of this study is to answer the…
The aim of this study is to evaluate an intervention aimed at improving family disclosure of inherited cancer risks by 1) supporting counselees in what they experience as a necessary, but at times difficult, task and, consequently 2) provide more at…
We aim to increase patient compliance by extending the existing treatment protocol of (oral or intravesical) anticholinergics plus application of CIC with the addition of bladder pressure measurement performed at home during CIC plus access to an…
The main objectives of this study are feeding techniques and skills and weight gain. Secondary objectives are NS feeding *feeding sequelae*, extent of the cleft, associated malformations, upper respiratory infections / pneumonia, medication (child…
The proposed study will focus on newly diagnosed breast cancer patients who, prior to receiving treatment, are identified on the basis of age or family history of breast or ovarian cancer as having at least a 10% risk of carrying a mutation in the…
To develop and evaluate a screening questionnaire as an aid in identifying individuals experiencing significant psychosocial problems associated with cancer genetic counseling. The questionnaire will be multidimensional and will be developed…
In this part of the project we use two 'categories' of test outcomes: false positives and positive test results for a metabolic disease that was not tested. Objectives of the study are to evaluate these categories of test outcomes by…
The aim of the proposed randomized controlled trial (RCT) is to determine the effectiveness, and related healthcare costs of a mHealth-based targeted clinical monitoring pathway in GUCH patients. The primary research question is to assess the effect…
Objective: The main objective of this study is to explore the executive, social-cognitive, and social functioning and behaviour of HT1 patients in relation to present and past tyrosine and phenylalanine levels, history of treatment and treatment…
The main objective of this study is to examine the executive, social-cognitive, and social functioning and behaviour of 7-30 year old PKU patients in relation to history of treatment and treatment adherence. It is expected that there will be…
Evaluate the clinical progression in patients with MPS IIIA who are untreated with any investigational product and to obtain standardized assessments: neurocognitive, behavioural, sleep-wake habits and effect of MPS IIIA on the quality of life of…