The translation of research findings into clinical practice is challenging, especially fields like in pediatric rheumatology, where the evidence base is limited, there are few clinical trials, and the conditions are rare and heterogeneous. Implementation science methodologies have been shown to reduce the research- to- practice gap in other clinical settings may have similar utility in pediatric rheumatology. This paper describes the key discussion points from the inaugural Childhood Arthritis and Rheumatology Research Alliance Implementation Science retreat held in February 2020. The aim of this report is to synthesize those findings into an Implementation Science Roadmap for pediatric rheumatology research. This roadmap is based on three foundational principles: fostering curiosity and ensuring discovery, integration of research and quality improvement, and patient-centeredness. We include six key steps anchored in the principles of implementation science. Applying this roadmap will enable researchers to evaluate the full range of research activities, from the initial clinical design and evidence acquisition to the application of those findings in pediatric rheumatology clinics and direct patient care.
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http://dx.doi.org/10.1186/s12969-022-00665-y | DOI Listing |
Front Pediatr
December 2024
Department of Pediatric Nephrology and Rheumatology, Sichuan Provincial Maternity and Child Health Care Hospital, Chengdu, Sichuan, China.
The sleep disorder nocturnal enuresis (NE) affects children's health and quality of life, as well as places a heavy burden on their families. Treatment improves the child's quality of life. Unfortunately, some parents do not seek treatment for their children because they are unaware or misinformed about NE.
View Article and Find Full Text PDFPediatr Blood Cancer
January 2025
Department of Pediatrics and Adolescent Medicine, Copenhagen University Hospital, Rigshospitalet, Copenhagen, Denmark.
Diagnosing acute graft-versus-host disease (aGvHD) following allogeneic hematopoietic stem cell transplantation (HSCT) is challenging due to heterogeneity in interpreting current clinical criteria. Recently, the Mount Sinai Acute GvHD International Consortium (MAGIC) criteria were introduced to improve diagnostic consistency. In a study of 117 pediatric patients undergoing HSCT, the modified Glucksberg and the MAGIC criteria were retrospectively compared.
View Article and Find Full Text PDFPediatr Nephrol
January 2025
Childhood Chronic Diseases Department, University Hospital of Nantes, 7 Quai Moncousu, 44093, Nantes, France.
Background: Severe respiratory complications following kidney transplantation have been reported, yet remain poorly understood in the pediatric population. This study aimed to document respiratory disease in this population.
Methods: At annual follow-ups, patients completed a respiratory symptoms questionnaire and underwent pulmonary function tests (PFTs).
Medicina (Kaunas)
December 2024
Unit of Nephrology and Dialysis, Department of Clinical and Experimental Medicine, A.O.U. "G. Martino", University of Messina, 98125 Messina, Italy.
Audits allow analysis of the delivery of care and the prevalence of diseases. This study investigated kidney diseases' impact on end-stage renal disease (ERSD) in patients younger than 30 years. : This analysis is retrospectively conducted on young dialysis-dependent patients included in the Sicilian Registry of Nephrology, Dialysis and Transplantation Participants.
View Article and Find Full Text PDFJ Clin Med
December 2024
Department of Internal Medicine, Hospital Clínic de Barcelona, Institut d'Investigacions Biomèdiques August Pi i Sunyer (IDIBAPS), University of Barcelona, 08036 Barcelona, Spain.
: Protracted febrile myalgia (PFM) is a rare but severe form of myalgia mainly occurring in pediatric patients with familial Mediterranean fever (FMF). PFM imaging and histopathological data remain scarce. : A comprehensive clinical, imaging, and histopathological characterization of PFM was performed by retrospectively analyzing a reference center cohort of adult patients with FMF and myalgia, and by a PubMed search of well-described cases with PFM.
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