Evaluation of improvements of the Cystic Fibrosis newborn screening protocol in the Netherlands: abstract en poster

Contribution of Host Defence Proteins and Peptides to Host-Microbiota Interactions in Chronic Inflammatory Lung Diseases

The respiratory tract harbours a variety of microorganisms, collectively called the respiratory microbiota. Over the past few years, alterations in respiratory and gut microbiota composition have been associated with chronic inflammatory diseases of the lungs. How these changes influence disease development and progression is an active field of...

Cost-effectiveness of newborn screening for cystic fibrosis determined with real-life data

BACKGROUND: Previous cost-effectiveness studies using data from the literature showed that newborn screening for cystic fibrosis (NBSCF) is a good economic option with positive health effects and longer survival. METHODS: We used primary data to compare cost-effectiveness of four screening strategies for NBSCF, i.e. immunoreactive trypsinogen...

Parental knowledge reduces long term anxiety induced by false-positive test results after newborn screening for cystic fibrosis

Background: False-positive screening results in newborn screening for cystic fibrosis may lead to parental stress, family relationship problems and a changed perception of the child's health. Aim of the study: To evaluate whether parental anxiety induced by a false positive screening result disappears after six months and to assess whether a...

To know or not to know, disclosure of a newborn carrier screening test result for cystic fibrosis

To know or not to know, disclosure of a newborn carrier screening test result for cystic fibrosis

Purpose: Most newborn screening (NBS) strategies for Cystic Fibrosis (CF) also identify carriers. However, it is unclear if parents want to be informed about their child's carrier status or not. Methods: Focus group discussions with pregnant couples to explore their opinions about disclosure of a carrier result for CF of their newborn. Results:...

Evidence-based guidelines for growth monitoring

Guidelines for growth monitoring can be established according to two approaches. According to the clinical approach, health workers are expected to base their assessment on the cumulative information from the medical history, physical examination and growth against a background of knowledge about the possible causes. The second approach is that...

Do false positive test results for newborn screening for cystic fibrosis lead to long term parental anxiety?

Growth monitoring to detect children with cystic fibrosis

Background/Aims: Cystic fibrosis (CF) in infancy and childhood is often associated with failure to thrive (FTT). This would suggest that in countries without a newborn screening program for CF, FTT could be used as a clinical screening tool. The aim of this study is to assess the diagnostic performance of FTT for identifying children with CF....

Developing evidence-based guidelines for referral for short stature

Objective: To establish evidence based guidelines for growth monitoring on a population basis. Study design: Several auxological referral criteria were formulated and applied to longitudinal growth data from four different patient groups, as well as three samples from the general population. Results: Almost 30% of pathology can be detected by...

Parental opinions about the expansion of the neonatal screening programme

Background: Advances in genomics will open up opportunities in the fields of genetic testing, early diagnosis and disease treatment. While neonatal screening is the field of application par excellencefor these developments, the debate on its potential benefits and drawbacks is mainly theoretically driven and based on the opinions of...

Decreased coenzyme Q10 concentration in plasma of children with cystic fibrosis

OBJECTIVES: Coenzyme Q10 (CoQ10) is an effective lipophilic antioxidant and protects against lipid peroxidation by scavenging radicals. Patients with cystic fibrosis generally have fat malabsorption; thus, we hypothesized that overall plasma CoQ10 concentration in pediatric patients with cystic fibrosis might be diminished. Because these...

Cost-effectiveness of 4 neonatal screening strategies for cystic fibrosis

OBJECTIVES. The purpose of this work was to assess the costs of 4 neonatal screening strategies for cystic fibrosis in relation to health effects. In each strategy, the first test was the measurement of serum concentration of immunoreactive trypsin. The second step consisted of either a second immunoreactive trypsin test (strategy 1) or a...

Measuring health-related quality of life in children: Difficulties and challenges

Variation by ethnicity in incidence of diabetes type 1 and clinical condition at onset in the Netherlands

Controversen in de preventieve gezondheidszorg II: De preconceptionele en prenatale zorg [Controversies in preventive health care II Preconceptional and prenatal care]