Using clinical registries to collect and monitor individual, case-level, and population health-relevant variables has been found to be effective at improving outcomes in adult populations. However, due to multiple barriers unique to pediatric care, there are limited available registries for youth and limited studies investigating their effectiveness for pediatric populations. This paper describes a process to develop clinical BH registries to address the BH needs of youth. The registry development process employed a community-hospital-accountable care organization (ACO) stakeholder partnership as part of a population health initiative within the ACO to develop a pediatric focused clinical BH registry. The development process used the exploration, preparation, implementation, sustainment (EPIS) strategy within the implementation science framework. The developed registry collects clinical, operational, and population health relevant variables that are important to guiding the development and sustainment of the initiatives outcomes. Stakeholders have determined the registry to be feasible and to meet the needs of the initiative. We created a pediatric clinical BH registry that is sensitive to the unique needs of youth across a broad range of common BH needs. While it is not without limitations, this paper serves as an example of a generalizable process to create functional registries for youth. Limitations and future directions are discussed. (PsycInfo Database Record (c) 2021 APA, all rights reserved).
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http://dx.doi.org/10.1037/fsh0000618 | DOI Listing |
Orphanet J Rare Dis
January 2025
Department of Human Genetics, Emory University, Atlanta, GA, USA.
Background: Late-onset Pompe disease (LOPD) is an autosomal recessive lysosomal storage disorder that results in severe progressive proximal muscle weakness. Over time, reductions in muscle strength result in respiratory failure and a loss of ambulation. Delayed diagnosis of LOPD deprives patients of treatments that can enhance quality of life and potentially slow disease progression.
View Article and Find Full Text PDFBMC Nephrol
January 2025
Medical Department III, Division of Nephrology, University Hospital Leipzig, Leipzig, Germany.
Background: Rhabdomyolysis is frequently associated with acute kidney injury (AKI). Due to the nephrotoxic properties of myoglobin, its rapid removal is relevant. If kidney replacement therapy (KRT) is necessary for AKI, a procedure with effective myoglobin elimination should be preferred.
View Article and Find Full Text PDFCardiovasc Intervent Radiol
January 2025
Department of Radiology, Hôpital Beaujon APHP Nord, Université Paris Cité, Paris, CRI, INSERM, 1149, Clichy, France.
Purpose: This analysis of the CIRSE Registry for SIR-Spheres Therapy in France, CIRT-FR, reports on real-world outcomes of transarterial radioembolisation (TARE) with Y90 resin microspheres for hepatocellular carcinoma (HCC) and colorectal cancer liver metastases (CRLM) patients in France, focusing on safety, effectiveness and health-related quality of life (HRQoL). Results on patients treated based on national reimbursement criteria are discussed here.
Methods: Prospective, multicentre, observational study of HCC and CRLM patients treated between August 2017 and July 2020 with TARE Y90 resin microspheres.
Sci Rep
January 2025
Division of Cardiology, Department of Internal Medicine, Faculty of Medicine, Chiang Mai University, 110, Inthawaroros Road, Sriphum, Chiang Mai, Chiang Mai, 50200, Thailand.
Lipid variability (LV) has been studied and proposed as a potential predictor for cardiovascular disease (CVD), and increased LV may contribute to adverse clinical outcomes. This study aimed to investigate the association of various LV parameters with the risk of long-term major adverse cardiovascular events (MACE) among the Thai population. The study used data from the CORE-Thailand Registry, a prospective multicentre study of adults with high cardiovascular risk or established CVD.
View Article and Find Full Text PDFEur J Heart Fail
January 2025
Jesselson Integrated Heart Centre, Shaare Zedek Medical Center, Hebrew University, Jerusalem, Israel.
Aims: To evaluate the association between transcatheter edge-to-edge repair (TEER) and outcomes in patients with significant mitral regurgitation (MR) following acute myocardial infarction (MI), focusing on the aetiology of acute post-MI MR in high-risk surgical patients.
Methods And Results: The International Registry of MitraClip in Acute Mitral Regurgitation following Acute Myocardial Infarction (IREMMI) includes 187 patients with severe MR post-MI managed with TEER. Of these, 176 were included in the analysis, 23 (13%) patients had acute papillary muscle rupture (PMR) and 153 (87%) acute secondary MR.
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