Metadata for Data dIscoverability aNd Study rEplicability in obseRVAtional Studies (MINERVA): Development and Pilot of a Metadata List and Catalogue in Europe.

Purpose: Metadata for data dIscoverability aNd study rEplicability in obseRVAtional studies (MINERVA), a European Medicines Agency-funded project (EUPAS39322), defined a set of metadata to describe real-world data sources (RWDSs) and piloted metadata collection in a prototype catalogue to assist investigators from data source discoverability through study conduct.

Methods: A list of metadata was created from a review of existing metadata catalogues and recommendations, structured interviews, a stakeholder survey, and a technical workshop. The prototype was designed to comply with the FAIR principles (findable, accessible, interoperable, reusable), using MOLGENIS software.

Benchmarking of survival outcomes following Haematopoietic Stem Cell Transplantation (HSCT): an update of the ongoing project of the European Society for Blood and Marrow Transplantation (EBMT) and Joint Accreditation Committee of ISCT and EBMT (JACIE).

From 2016 EBMT and JACIE developed an international risk-adapted benchmarking program of haematopoietic stem cell transplant (HSCT) outcome to provide individual EBMT Centers with a means of quality-assuring the HSCT process and meeting FACT-JACIE accreditation requirements relating to 1-year survival outcomes. Informed by previous experience from Europe, North America and Australasia, the Clinical Outcomes Group (COG) established criteria for patient and Center selection, and a set of key clinical variables within a dedicated statistical model adapted to the capabilities of the EBMT Registry. The first phase of the project was launched in 2019 to test the acceptability of the benchmarking model through assessment of Centers' performance for 1-year data completeness and survival outcomes of autologous and allogeneic HSCT covering 2013-2016.

Randomized double-blind placebo-controlled crossover trial with pyridostigmine in spinal muscular atrophy types 2-4.

Hereditary proximal spinal muscular atrophy causes weakness and increased fatigability of repetitive motor functions. The neuromuscular junction is anatomically and functionally abnormal in patients with spinal muscular atrophy. Pharmacological improvement of neuromuscular transmission may therefore represent a promising additional treatment strategy.

Misclassification of stunting, underweight and wasting in children 0-5 years of South Asian and Dutch descent: ethnic-specific . WHO criteria.

Objective: Several authors have questioned the suitability of WHO Child Growth Standards (WHO-CGS) for all ethnic groups. The aim of this study was to identify potential misclassification of stunting, underweight and wasting in children of Surinamese Asian Indian, South Asian (Pakistan/India) and Dutch descent.

Design: A series of routine cross-sectional measurements, collected 2012-2015.

Determinants of (non-)attendance at the Dutch cancer screening programmes: A systematic review.

Objective: The Netherlands host three population-based cancer screening programmes: for cervical, breast, and colorectal cancer. For screening programmes to be effective, high participation rates are essential, but participation in the Netherlands' programmes is starting to fall below the minimal effective rate. We aimed to produce a systematic overview of the current known determinants of (non-)attendance at the Dutch cancer screening programmes.

Agreement between measurement of 25-hydroxyvitamin D in dried blood spot samples and serum in a Chinese population in the Netherlands.

Blood for determining 25-hydroxyvitamin D [25(OH)D] is usually obtained through venipuncture although, as an alternative for serum, dried blood spot (DBS) can be considered. The aim of this proof-of-concept study was to investigate levels of agreement between measurements of 25(OH)D obtained with DBS compared with serum. 301 Chinese participants were included who completed 25(OH)D measurement from DBS and from simultaneously collected blood samples obtained by venipuncture.

Critical design considerations for time-to-event endpoints in amyotrophic lateral sclerosis clinical trials.

Background: Funding and resources for low prevalent neurodegenerative disorders such as amyotrophic lateral sclerosis (ALS) are limited, and optimising their use is vital for efficient drug development. In this study, we review the design assumptions for pivotal ALS clinical trials with time-to-event endpoints and provide optimised settings for future trials.

Methods: We extracted design settings from 13 completed placebo-controlled trials.

Effect of neighbourhood socioeconomic status on overweight and obesity in children 2-15 years of different ethnic groups.

Background: Studies on the influence of neighbourhood socioeconomic status (N-SES) on overweight and obesity rates in children from different ethnic backgrounds are scarce. This study investigated the differential effect of N-SES on overweight (including obesity) and obesity prevalence in different ethnic groups, and if N-SES explains ethnic differences in the prevalence of overweight and obesity.

Design: A population based study of 109 766 body mass index (BMI) measurements of 86 209 children 2-15 years of Dutch, Turkish, Moroccan and South Asian descent.

[Infectious disease control for asylum seekers entering the Netherlands in 2018: is reform necessary?].

The number of asylum seekers entering the Netherlands has increased. However, the screening, detection and treatment of infectious diseases in asylum seekers has barely changed over the last 15 years. Infectious diseases, including vaccine-preventable diseases are being carried into the Netherlands by asylum seekers.

Growing ethnic disparities in prevalence of overweight and obesity in children 2-15 years in the Netherlands.

Background: Overweight and obesity rates stabilized or declined in the largest ethnic groups in the Netherlands, while reports on thinness are conflicting. Ethnic inequalities in time trends are unknown. The aim of this study was to examine (differences in) trends in overweight (including obesity), obesity, severe obesity and thinness in children of Dutch, Turkish, Moroccan and South Asian descent.

Tracking of thinness and overweight in children of Dutch, Turkish, Moroccan and South Asian descent from 3 through 15 years of age: a historical cohort study.

Background: Overweight is shown to track (= to maintain a relative position in a distribution) from childhood to adulthood, but is mostly studied in preobesogenic cohorts and in single ethnic groups. Little is known about tracking of thinness by ethnicity.

Objectives: to determine (differences in) tracking of BMI (class) from 3 through 15 years and the prediction of BMI class at 13-15 years of age in contemporary Dutch, Turkish, Moroccan and South Asian children living in the Netherlands.

Prognosis for patients with amyotrophic lateral sclerosis: development and validation of a personalised prediction model.

Background: Amyotrophic lateral sclerosis (ALS) is a relentlessly progressive, fatal motor neuron disease with a variable natural history. There are no accurate models that predict the disease course and outcomes, which complicates risk assessment and counselling for individual patients, stratification of patients for trials, and timing of interventions. We therefore aimed to develop and validate a model for predicting a composite survival endpoint for individual patients with ALS.

BMI-for-age in South Asian children of 0-20 years in the Netherlands: secular changes and misclassification by WHO growth references.

Background: South Asians are prone to cardiometabolic disease at lower BMI levels than most other ethnic groups, starting in childhood. The magnitude of BMI misclassifications is unknown.

Aim: To compare the BMI distribution of contemporary South Asian 0-20 year olds in the Netherlands with: (1) The South Asian norm reference (secular trends); and (2) The WHO child growth standard and reference.

Development of the Social Network-Based Intervention "" Using Intervention Mapping.

This article describes the development of the social network-based intervention which aims to improve diabetes self-management (DSM) among patients with type 2 diabetes living in socioeconomically deprived neighborhoods by stimulating social support for DSM and diminishing social influences hindering DSM (e.g., peer pressure and social norms).

Recruitment and retention in a 10-month social network-based intervention promoting diabetes self-management in socioeconomically deprived patients: a qualitative process evaluation.

Objectives: Socioeconomically deprived patients with type 2 diabetes often face challenges with self-management, resulting in more diabetes-related complications. However, these groups are often under-represented in self-management interventions. Evidence on effective recruitment and retention strategies is growing, but lacking for intensive self-management interventions.

The impact of a social network based intervention on self-management behaviours among patients with type 2 diabetes living in socioeconomically deprived neighbourhoods: a mixed methods approach.

Aims: This paper aims to explore the effect of the social network based intervention Powerful Together with Diabetes on diabetes self-management among socioeconomically deprived patients. This 10-month group intervention targeting patients and significant others aimed to improve self-management by stimulating social support and diminishing social influences that hinder self-management.

Methods: This intervention was evaluated in a quasi-experimental study using a mixed methods approach.

Effectiveness of a targeted lifestyle intervention in primary care on diet and physical activity among South Asians at risk for diabetes: 2-year results of a randomised controlled trial in the Netherlands.

Objectives: In South Asian populations, little is known about the effects of intensive interventions to reduce the risk of type 2 diabetes on health behaviour. We examined the effectiveness at 2 years of a culturally targeted lifestyle intervention on diet, physical activity and determinants of behaviour change among South Asians at risk for diabetes.

Design: Randomised controlled trial with de facto masking.

Determinants of participation in a cardiometabolic health check among underserved groups.

Cardiometabolic diseases affect underserved groups disparately. Participation in health checks is also lower, widening health inequalities in society. Two-stage screening (non-invasive health risk assessment (HRA) and GP consultations for high-risk individuals) seems cost-effective, provided that drop-out rates are low in both steps.

Impact of a social network-based intervention promoting diabetes self-management in socioeconomically deprived patients: a qualitative evaluation of the intervention strategies.

Objective: There is a need for effective interventions that improve diabetes self-management (DSM) among socioeconomically deprived patients with type 2 diabetes. The group-based intervention Powerful Together with Diabetes (PTWD) aimed to increase social support for DSM and decrease social influences hindering DSM (eg, peer pressure, social norms) in patients living in deprived neighbourhoods. Through a qualitative process evaluation, this paper aims to study whether this intervention changed social support and social influences, and which elements of the intervention contributed to this.

Vitamin D status and bone mineral density in the Chinese population: a review.

Unlabelled: Low vitamin D status is associated with low bone mass which, in turn, is an important predictor of fracture. However, data on this relationship in non-Caucasian populations are scarce. This review shows such an association in the Chinese population in five of the 11 included studies.

Vitamin D status in the Chinese population in the Netherlands: The DRAGON study.

Introduction: Vitamin D is essential for bone health since it stimulates the intestinal absorption of calcium and phosphorus from the gut, both necessary for bone mineralization. However, vitamin D deficiency is highly prevalent among several non-Western immigrant populations in the Netherlands. To date, there are no data available of the vitamin D status in the Chinese population residing in the Netherlands.

Response and participation of underserved populations after a three-step invitation strategy for a cardiometabolic health check.

Background: Ethnic minority and native Dutch groups with a low socioeconomic status (SES) are underrepresented in cardiometabolic health checks, despite being at higher risk. We investigated response and participation rates using three consecutive inexpensive-to-costly culturally adapted invitation steps for a health risk assessment (HRA) and further testing of high-risk individuals during prevention consultations (PC).

Methods: A total of 1690 non-Western immigrants and native Dutch with a low SES (35-70 years) from six GP practices were eligible for participation.