The past, present, and future of research on anaphylaxis in Korean children

Anaphylaxis is a serious, life-threatening hypersensitivity reaction that is rapid in onset and might cause death when not treated promptly. Recently, the prevalence of anaphylaxis has been increasing worldwide, especially in children, and food-induced anaphylaxis is rapidly increasing. With the establishment of the Korean Academy of Pediatric Allergy and Respiratory Disease in 1987, awareness of anaphylaxis has been heightened in Korea as well. Initially, it was considered a clinical form of food or drug hypersensitivity, but not a single disease entity. After the second symposium on anaphylaxis in 2006 and the World Allergy Organization guideline on anaphylaxis in 2011, research more focused on anaphylaxis is ongoing. The study of anaphylaxis in Korean children was initially restricted to case reports due to novel triggers. Thereafter, research on the age-specific prevalence of anaphylaxis was conducted using the national big data and more recently, a large-scale hospital-based multicenter study was conducted. Also, reliable data on food-induced anaphylaxis have been attained through a large-scale multicenter case study and a population-based epidemiological study on food allergy and currently, a prospective multicenter anaphylaxis registry has been launched funded by Korea Centers for Disease Control and Prevention. These series of studies have contributed to the international competitiveness in pediatric anaphylaxis research. However, there are still unmet needs such as diagnosis, severity, treatment or intervention of anaphylaxis, education for the prevention of recurrence, and establishment of policies for social safety. Further studies addressing these issues will contribute to improvement of quality of life and overcoming of the disease.

Registro prospectivo durante un año de enfermedad inflamatoria intestinal en población pediátrica argentina / One-year prospective registry of inflammatory bowel disease in the Argentine pediatric population

Introducción. La enfermedad inflamatoria intestinal (EII) comprende la colitis ulcerosa (CU) y la enfermedad de Crohn (EC). Su diagnóstico es cada vez más frecuente en pediatría y la incidencia es desconocida en Argentina. El objetivo de este trabajo fue determinar la incidencia anual de EII en menores de 18 años de nuestro país, los aspectos epidemiológicos y las formas clínicas de presentación. Población y métodos. Estudio prospectivo, multicéntrico y observacional que abarcó todo el territorio nacional. Se incluyeron menores de 18 años con diagnóstico de EII de centros públicos y privados entre el 1/6/2012 y el 31/5/2013, a través de protocolo en la web. Resultados. Participaron 17 centros, y se registraron 50 pacientes en 10 centros. La incidencia fue 0, 4/100 000 < 18 años; EC, 20; CU, 25; y EII no clasificable, 5. Distribución según sexo: 26 varones y 24 mujeres. La edad media al momento del diagnóstico fue de 9, 7 años y la demora diagnóstica, de 16, 5 meses. Los síntomas y signos más frecuentes fueron diarrea crónica con sangre y/o moco, dolor abdominal y adelgazamiento. El retraso del crecimiento fue menor de lo esperado. Las manifestaciones extraintestinales se presentaron en el 24% en CU y en el 25% en EC. La localización más frecuente en EC fue ileocolónica, y, en CU, pancolónica. No se observó CU con formas graves. Conclusiones. La incidencia fue menor que la reportada por otros registros. Se considera conveniente la creación de un registro permanente, que no solo permita conocer la incidencia, sino también servir de apoyo a los centros referentes que diagnostican y tratan esta patología.

Introduction. Inflammatory bowel disease (IBD) includes ulcerative colitis (UC) and Crohn's disease (CD). IBD diagnosis has become increasingly common in pediatrics but its incidence is unknown in Argentina. The objective of this study was to determine the annual incidence of IBD in children and adolescents younger than 18 years in Argentina, its epidemiological aspects, and clinical presentations. Population and methods. Prospective, observational, multicenter study conducted in Argentina. Children and adolescents younger than 18 years from public and private facilities, diagnosed with IBD between June 1st, 2012 and May 31st, 2013 were included via a web protocol. Results. Seventeen sites participated in the study; 50 patients were recruited from 10 sites. IBD incidence was 0.4/100 000 among individuals <18 years; CD, 20; UC, 25; and idiopathic IBD, 5. Distribution by sex: 26 boys and 24 girls. Patients' mean age at diagnosis was 9.7 years, and delay in the diagnosis was 16.5 months. The most common symptoms and signs were chronic diarrhea with blood and/or mucus, abdominal pain, and weight loss. Growth retardation was less common than expected. Extraintestinal manifestations were observed in 24% of UC cases and in 25% of CD cases. The most common location of CD was the ileum and colon, and of UC was the entire colon (pancolonic). There were no cases with severe UC. Conclusions. The incidence was lower than that reported in other registries. We recommend the development of an ongoing registry, to establish the incidence of IBD, but also to serve as backup for referring facilities where this disease is diagnosed and treated.

Data Management and Site-Visit Monitoring of the Multi-Center Registry in the Korean Neonatal Network

The Korean Neonatal Network (KNN), a nationwide prospective registry of very-low-birth-weight (VLBW, < 1,500 g at birth) infants, was launched in April 2013. Data management (DM) and site-visit monitoring (SVM) were crucial in ensuring the quality of the data collected from 55 participating hospitals across the country on 116 clinical variables. We describe the processes and results of DM and SVM performed during the establishment stage of the registry. The DM procedure included automated proof checks, electronic data validation, query creation, query resolution, and revalidation of the corrected data. SVM included SVM team organization, identification of unregistered cases, source document verification, and post-visit report production. By March 31, 2015, 4,063 VLBW infants were registered and 1,693 queries were produced. Of these, 1,629 queries were resolved and 64 queries remain unresolved. By November 28, 2014, 52 participating hospitals were visited, with 136 site-visits completed since April 2013. Each participating hospital was visited biannually. DM and SVM were performed to ensure the quality of the data collected for the KNN registry. Our experience with DM and SVM can be applied for similar multi-center registries with large numbers of participating centers.