Self-Management assistance for recommended treatment (SMART) IBD app randomized control trial in adolescents with IBD: Design and methodology.

Aims: Adherence to medical regimens, including medications and appointments, is a significant concern for adolescent populations that warrants behavioral interventions. Negative health behaviors during adolescence can persist into adulthood and lead to long-term negative health outcomes. Due to the limited availability and resources for behavioral self-management intervention, many youth do not receive evidence-based behavioral care and continue to struggle with managing their illness.

Inherited kidney disease and CAKUT are common causes of kidney failure requiring kidney replacement therapy: an ERA Registry study.

Background: Inherited kidney diseases (IKD) and congenital anomalies of the kidney and urinary tract (CAKUT) are causes of kidney failure requiring kidney replacement therapy (KRT) that major renal registries usually amalgamate into the primary renal disease (PRD) category 'miscellaneous' or in the glomerulonephritis or pyelonephritis categories. This makes IKDs invisible (except for polycystic kidney disease) and may negatively influence the use of genetic testing, which may identify a cause for IKDs and some CAKUT.

Methods: We have re-examined the etiology of KRT by composing a separate IKD and CAKUT PRD group using data from the European Renal Association (ERA) Registry.

Adult outcomes of childhood kidney replacement therapy in Europe from 2008 to 2019: an ERA Registry study.

Background And Hypothesis: Young adults starting kidney replacement therapy (KRT) during childhood and reaching their 18th birthday (i.e. adult survivors of childhood KRT) form a challenging population of interest to nephrologists treating adults, as during this period there will be a transition to adult renal centres.

The validity of pathology codes for biopsy-confirmed kidney disease in the Danish National Patobank.

Background: This study validates the application of Systematized Nomenclature of Medicine second edition (SNOMED II) codes used to describe medical kidney biopsies in Denmark in encoded form, aiming to support robust epidemiological research on the causes, treatments and prognosis of kidney diseases.

Methods: Kidney biopsy reports from 1 January 1998 to 31 December 2018 were randomly extracted from the Danish National Patobank, using SNOMED codes. A 5% sample was selected, and nephrologists assessed the corresponding medical records, assigning each case the applied clinical diagnoses.

Functional Linkers Support Targeting of Multivalent Tweezers to Taspase1.

Taspase 1 is a unique protease not only pivotal for embryonic development but also implicated in leukemias and solid tumors. As such, this enzyme is a promising while still challenging therapeutic target, and with its protein structure featuring a flexible loop preceding the active site a versatile model system for drug development. Supramolecular ligands provide a promising complementary approach to traditional small-molecule inhibitors.

Changes in the epidemiology of kidney replacement therapy across Europe in 2020-the first year of the COVID-19 pandemic: an ERA Registry study.

Background: In 2020, the coronavirus disease 2019 (COVID-19) pandemic caused disruptions in kidney replacement therapy (KRT) services worldwide. The aim of this study was to assess the effect of the COVID-19 pandemic in 2020 on the incidence of KRT, kidney transplantation activity, mortality and prevalence of KRT across Europe.

Methods: Patients receiving KRT were included from 17 countries providing data to the European Renal Association Registry.

Pilot and feasibility of the SMART IBD mobile app to improve self-management in pediatric inflammatory bowel disease.

Objectives: Access to evidence-based self-management support in pediatric inflammatory bowel disease (IBD) is a significant challenge. Digital therapeutic solutions can increase access and provide data to patients and providers that would otherwise not be available. We have iteratively developed a mobile application, Self-Management Assistance with Recommended Treatment (SMART) IBD, that allows patients to access self-management support and record symptoms and medication adherence.

The ERA Registry Annual Report 2021: a summary.

Background: The European Renal Association (ERA) Registry collects data on kidney replacement therapy (KRT) in patients with end-stage kidney disease (ESKD). This paper is a summary of the ERA Registry Annual Report 2021, including a comparison across treatment modalities.

Methods: Data was collected from 54 national and regional registries from 36 countries, of which 35 registries from 18 countries contributed individual patient data and 19 registries from 19 countries contributed aggregated data.

A comparison of the epidemiology of kidney replacement therapy between Europe and the United States: 2021 data of the ERA Registry and the USRDS.

Background: This paper compares the most recent data on the incidence and prevalence of kidney replacement therapy (KRT), kidney transplantation rates, and mortality on KRT from Europe to those from the United States (US), including comparisons of treatment modalities (haemodialysis (HD), peritoneal dialysis (PD), and kidney transplantation (KTx)).

Methods: Data were derived from the annual reports of the European Renal Association (ERA) Registry and the United States Renal Data System (USRDS). The European data include information from national and regional renal registries providing the ERA Registry with individual patient data.

Feasibility pilot trial of a tailored medication adherence-promotion intervention for adolescents and young adults with cancer: Study design and protocol.

Background: Medication non-adherence is common among adolescents and young adults (AYAs) with cancer and associated with poor health outcomes. AYAs with cancer endorse multiple barriers to adherence that differ across individuals, suggesting that tailoring intervention content to an AYA's specific barriers may have the potential to improve adherence. The purpose of this manuscript is to report on ORBIT-guided Phase I design efforts to create the first tailored adherence-promotion intervention for AYAs with cancer and the study protocol for the ongoing Phase II pilot feasibility trial.

Potentiating Tweezer Affinity to a Protein Interface with Sequence-Defined Macromolecules on Nanoparticles.

Survivin, a well-known member of the inhibitor of apoptosis protein family, is upregulated in many cancer cells, which is associated with resistance to chemotherapy. To circumvent this, inhibitors are currently being developed to interfere with the nuclear export of survivin by targeting its protein-protein interaction (PPI) with the export receptor CRM1. Here, we combine for the first time a supramolecular tweezer motif, sequence-defined macromolecular scaffolds, and ultrasmall Au nanoparticles (us-AuNPs) to tailor a high avidity inhibitor targeting the survivin-CRM1 interaction.

Children with uncontrolled asthma from economically disadvantaged neighborhoods: Needs assessment and the development of a school-based telehealth and electronic inhaler monitoring system.

Background: Children from economically disadvantaged communities often encounter healthcare access barriers, increasing risk for poorly controlled asthma and subsequent healthcare utilization. This highlights the need to identify novel intervention strategies for these families.

Objective: To better understand the needs and treatment preferences for asthma management in children from economically disadvantaged communities and to develop a novel asthma management intervention based on an initial needs assessment and stakeholder feedback.

The microbiome in adolescents with irritable bowel syndrome and changes with percutaneous electrical nerve field stimulation.

Background: Irritable bowel syndrome (IBS), a disorder of the gut-brain axis, is affected by the microbiome. Microbial studies in pediatric IBS, especially for centrally mediated treatments, are lacking. We compared the microbiome between pediatric IBS patients and healthy controls (HC), in relation to symptom severity, and with percutaneous electrical nerve field stimulation (PENFS), a non-invasive treatment targeting central pain pathways.

Disparities in treatment and outcome of kidney replacement therapy in children with comorbidities: an ESPN/ERA Registry study.

Background: Data on comorbidities in children on kidney replacement therapy (KRT) are scarce. Considering their high relevance for prognosis and treatment, this study aims to analyse the prevalence and implications of comorbidities in European children on KRT.

Methods: We included data from patients <20 years of age when commencing KRT from 2007 to 2017 from 22 European countries within the European Society of Paediatric Nephrology/European Renal Association Registry.

Use of Behavior Change Techniques and Quality of Commercially Available Inflammatory Bowel Disease Apps.

Background: Inclusion of evidence-based behavior change techniques (e.g., self-monitoring) in mobile health apps has the potential to promote adherence to inflammatory bowel disease treatment.

Digital headache self-management interventions for patients with a primary headache disorder: A systematic review of randomized controlled trials.

Objective: This article systematically reviews the empirical literature examining the efficacy of digital headache management interventions for patients with a primary headache disorder.

Background: Digital headache management interventions provide opportunities to improve access to behavioral headache interventions to underserved groups.

Methods: A systematic search of PubMed, Scopus, and EBSCO (PsycInfo, Education Research Complete, ERIC, Health Source: Nursing/Academic Edition, Psychology and Behavioral Sciences Collection) and reference review was conducted.

Examining the Unified Theory of Behavior Change Constructs Among Adolescents Taking Attention-Deficit/Hyperactivity Disorder Medicine: A Longitudinal Study.

Objective: To quantitatively validate the preintention factors, behavioral intentions, and implementation factors and examine the relationships theorized by the Unified Theory of Behavior Change (UTBC) model among adolescents with attention-deficit/hyperactivity disorder (ADHD).

Methods: We conducted longitudinal analyses of data from 40 adolescents with ADHD, aged 11 to 15 years old, and their parents, including self-report of UTBC constructs using standardized measures. We collected pharmacy dispensing records for adolescents for the 4 months that followed.

Digital Therapeutic Self-Management Intervention in Adolescents With Inflammatory Bowel Disease.

The objective of this study was to design, code, and test the feasibility, acceptability, and preliminary efficacy of a digital therapeutic self-management tool for pediatric inflammatory bowel disease (IBD). The Self-Management Assistance for Recommended Treatment (SMART) portal development involved an iterative co-design process with a series of focus group/interview sessions with key stakeholders. Subsequently, a pilot, single-arm, open-label trial was conducted with 22 patients; medication adherence was the primary outcome.

Technology-Assisted Stepped-Care to Promote Adherence in Adolescents with Asthma: A Pilot Study.

To examine the feasibility, acceptability, and preliminary efficacy of a technology-assisted stepped-care behavioral intervention to improve adherence in adolescents with asthma. Thirty adolescents (M = 14.66, 53% male) with moderate to severe-persistent asthma completed daily adherence monitoring and medication reminders via a mobile app (Step 1).