Registry

TwinsMX registry is a national research initiative in Mexico that aims to understand the complex interplay between genetics and environment in shaping physical and mental health traits among the country's population. With a multidisciplinary approach, TwinsMX aims to advance our knowledge of the genetic and environmental mechanisms underlying ethnic variations in complex traits and diseases, including behavioral, psychometric, anthropometric, metabolic, cardiovascular and mental disorders. With information gathered from over 2800 twins, this article updates the prevalence of several complex traits; and describes the advances and novel ideas we have implemented such as magnetic resonance imaging...

INTRODUCTION: The negative impact of unmanaged psychological distress on quality of life and outcome in breast cancer survivors has been demonstrated. Fortunately, studies indicate that distress can effectively be addressed and even prevented using evidence-based interventions. In Germany prescription-based mobile health apps, known as DiGAs (digital health applications), that are fully reimbursed by health insurances, were introduced in 2020. In this study, the effectiveness of an approved breast cancer DiGA was investigated: The personalized coaching app PINK! Coach supports and accompanies breast cancer patients during therapy and follow-up...

BACKGROUND: Advancements in type 2 diabetes mellitus (T2DM) therapy, notably with weekly agents like glucagon-like peptide-1 receptor agonists (GLP-RAs) such as dulaglutide, offer promising outcomes in clinical practice. The emergence of once-weekly insulin adds to this therapeutic arsenal. This research aims to explore and compare the efficacy and safety profiles of these agents in diabetes management, facilitating informed decision-making for optimizing their utilization in clinical practice...

BACKGROUND: The efficiency of different first-line treatments, such as first-line surgery and assisted reproductive technology (ART), in women with deep infiltrating endometriosis (DIE) is still unclear due to a lack of direct comparative trials. This systematic review and meta-analysis aim to elucidate and compare the efficacies of first-line treatments in patients with DIE, with an emphasis on fertility outcomes. METHODS: An exhaustive search of PubMed Central, SCOPUS, EMBASE, MEDLINE, Cochrane trial registry, Google Scholar, and Clinicaltrials...

BACKGROUND: Adolescent self-reported psychotic experiences are associated with mental illness and could help guide prevention strategies. The Community Assessment of Psychic Experiences (CAPE) was developed over 20 years ago. In a rapidly changing society, where new generations of adolescents are growing up in an increasingly digital world, it is crucial to ensure high reliability and validity of the questionnaire. METHODS: In this observational validation study, we used unique transgenerational questionnaire and health registry data from the Norwegian Mother, Father, and Child Cohort, a population-based pregnancy cohort...

PURPOSE: Out-of-hospital cardiac arrest (OHCA) remains a global healthcare problem, with low survival and bystander cardiopulmonary resuscitation (CPR) rates. This study aimed to identify event-related factors in OHCA and their impact on return of spontaneous circulation (ROSC) achievement and maintenance until hospital admission. PATIENTS AND METHODS: All data were collected from Utstein Resuscitation Registry Template for OHCA from The Institute of Emergency Medicine of Zagreb from January 2012 to August 2022...

OBJECTIVE: To characterize the eosinophilic granulomatosis with polyangiitis (EGPA) population from the POLVAS registry depending on ANCA status and diagnosis onset, including their comparison with the granulomatosis with polyangiitis (GPA) subset with elevated blood eosinophilia (min. 400/ μ l) (GPA HE) to develop a differentiating strategy. METHODS: A retrospective analysis of the POLVAS registry. RESULTS: The EGPA group comprised 111 patients...

Introduction Falls from beds (FFBs) among outpatient elderly individuals are a prevalent issue, particularly for those aged 65 and above. This presents a notable health challenge with consequences that extend beyond personal well-being, placing a considerable strain on healthcare systems. Fall-related injuries often result in reduced independence, increased morbidity, and, in severe instances, fatalities. It is crucial to address these outpatient falls to safeguard the health and independence of the elderly population...

Background: Bismuth subsalicylate (BSS), probiotics, rifaximin, and vaccines have been proposed as preventive modalities for patients with travelers' diarrhea (TD), but their comparative effectiveness for prevention has rarely been studied. We aimed to perform a systematic review and network meta-analysis to test whether one of these modalities is more effective than the others in reducing the incidence of TD. Methods: We searched Pubmed, Embase, the Cochrane Central Register of Controlled Trials (CENTRAL), Web of Science, and clinical registries from inception of the databases through 18 November 2023, without language restriction, for randomized controlled trials (RCTs) evaluating the efficacy of BSS, probiotics, rifaximin, and vaccines in preventing TD...

One-third of total government spending across the globe goes to public procurement, amounting to about 10 trillion dollars a year. Despite its vast size and crucial importance for economic and political developments, there is a lack of globally comparable data on contract awards and tenders run. To fill this gap, this article introduces the Global Public Procurement Dataset (GPPD). Using web scraping methods, we collected official public procurement data on over 72 million contracts from 42 countries between 2006 and 2021 (time period covered varies by country due to data availability constraints)...

BACKGROUND: Danish Palliative Care Database comprises five quality indicators: (1) Contact with specialised palliative care (SPC) among referred patients, (2) Waiting time of less than 10 days, (3) Proportion of patients who died from (A) cancer or (B) non-cancer diseases, and had contact with SPC, (4) Proportion of patients completing the patient-reported outcome measure at baseline (EORTC QLQ-C15-PAL), and (5) Proportion of patients discussed at a multidisciplinary conference. PURPOSE: To investigate changes in the quality indicators from 2010 until 2020 in cancer and non-cancer patients...

OBJECTIVE: To examine differential changes in receipt of surgery at National Cancer Institute (NCI)-designated comprehensive cancer centers (NCI-CCC) and Commission on Cancer (CoC) accredited hospitals for patients with cancer more likely to be newly eligible for coverage under Affordable Care Act (ACA) insurance expansions, relative to those less likely to have been impacted by the ACA. DATA SOURCES AND STUDY SETTING: Pennsylvania Cancer Registry (PCR) for 2010-2019 linked with discharge records from the Pennsylvania Health Care Cost Containment Council (PHC4)...

OBJECTIVES: Children comprise up to 30-50 percent of all disaster victims. Pediatric disaster medicine is a poorly established field, and most protocols are designed without adequate emphasis on the special needs of the pediatric population. During the 2021 Shavuot holiday in Israel, the collapse of temporary steel bleachers in a partially constructed synagogue resulted in a mass casualty incident (MCI) with a majority of pediatric casualties. This study analyzed the differences in post-incident casualty management, treatment, and outcomes in three Jerusalem medical centers...

TRIAL DESIGN: Older adults experience chronic dysregulation of leukocytes and inflammatory cytokines, both at rest and in response to resistance training. Systemic hypoxia modulates leukocytes and cytokines, therefore this study characterized the effects of normobaric hypoxia on the leukocyte and cytokine responses of older adults to resistance training. METHODS: 20 adults aged 60-70 years performed eight weeks of moderate-intensity resistance training in either normoxia or normobaric hypoxia (14...

Regulatory marketing authorisation is not enough to ensure patient access to new medicinal products. Health Technology Assessment bodies may require data on effectiveness, relative effectiveness, and cost-effectiveness. Healthcare systems may require data on clinical utility, savings, and budget impact. Furthermore, the exact requirements of these bodies vary country by country and sometimes even region to region, resulting in a patchwork of different data requirements to achieve effective, reimbursed patient access to new therapies...

BACKGROUND: Limited studies of multiple sclerosis (MS) exist whereby magnetic resonance imaging (MRI) of the brain with consistent imaging protocols occurs at the same time points as collection of healthy lifestyle measures. The aim of this study was to test the feasibility, acceptability and preliminary efficacy of acquiring MRI data as an objective, diagnostic and prognostic marker of MS, at the same time point as brain-healthy lifestyle measures including diet. METHODS: Participants living with relapsing remitting MS partook in one structural MRI scanning session of the brain, completed two online 24-hour dietary recalls and demographic and self-reported lifestyle questionnaires (e...

OBJECTIVE: To evaluate mindfulness-based intervention for hypertension with depression and/or anxiety. METHODS: 10-week mindfulness-based intervention, including health education for hypertension, exclusively for the control group, was administered to the intervention group to assist sixty hypertension patients with depression/anxiety. Among them, the intervention group comprised 8 men and 22 women, with a mean age of 60.02 years and a mean duration of hypertension of 6...

BACKGROUND: Multiple myeloma (MM) is the second most common haematological cancer worldwide. Along with related diseases including monoclonal gammopathy of undetermined significance (MGUS), plasma cell leukaemia (PCL) and plasmacytoma, MM incidence is rising, yet it remains incurable and represents a significant disease burden. Clinical registries can provide important information on management and outcomes, and are vital platforms for clinical trials and other research. The Asia-Pacific Myeloma and Related Diseases Registry (APAC MRDR) was developed to monitor and explore variation in epidemiology, treatment regimens and their impact on clinical outcomes across this region...

BACKGROUND: Females of reproductive age with concussion report a greater number of symptoms that can be more severe and continue for longer than age matched males. Underlying mechanisms for sex differences are not well understood. Short non-coding Ribonucleic Acids (sncRNAs) are candidate salivary biomarkers for concussion and have been studied primarily in male athletes. Female sex hormones influence expression of these biomarkers, and it remains unclear whether a similar pattern of sncRNA expression would be observed in females following concussion...

BACKGROUND AND OBJECTIVE: Aberrant accumulation of glycosphingolipids (GSLs) in the lysosome leads to GSL storage diseases. Glucosylceramide synthase inhibitors (GCSi) have the potential to treat several GSL storage diseases by reducing the synthesis of the disease-causing GSLs. AL01211 is a potent oral GCSi under investigation for Type 1 Gaucher disease and Fabry disease. Here, we evaluate the pharmacokinetics, pharmacodynamics, safety, and tolerability of AL01211 in healthy Chinese volunteers...