0000000000877287

AUTHOR

Rik Joos

showing 4 related works from this author

The European network for care of children with paediatric rheumatic diseases : Care across borders

2019

Objectives. To provide an overview of the paediatric rheumatology (PR) services in Europe, describe current delivery of care and training, set standards for care, identify unmet needs and inform future specialist service provision. Methods. An online survey was developed and presented to national coordinating centres of the Paediatric Rheumatology International Trials Organisation (PRINTO) (country survey) and to individual PR centres (centre and disease surveys) as a part of the European Union (EU) Single Hub and Access point for paediatric Rheumatology in Europe project. The survey contained components covering the organization of PR care, composition of teams, education, health care and …

Transition to Adult Caremedicine.medical_specialtyBiomedical Researchstandards of careChild Health ServicesPopulationDiseaseHealth Services AccessibilityTransition management (governance)paediatric rheumatology03 medical and health sciences0302 clinical medicineRheumatologyRheumatic DiseasesHealth caremedicineJournal ArticleHumansmedia_common.cataloged_instancePharmacology (medical)030212 general & internal medicineEuropean unionChildeducationIntersectoral Collaborationmedia_common030203 arthritis & rheumatologyService (business)Biological ProductsHealth Services Needs and Demandeducation.field_of_studyEducation Medicalbusiness.industryStandard of CareDrug Utilizationpaediatric rheumatology service provision standards of careEuropeEastern europeanClinical trialHealth Care SurveysFamily medicineservice provisionHealth Services ResearchDrug MonitoringbusinessDelivery of Health CareRheumatology (United Kingdom)
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Phenotypic variability and disparities in treatment and outcomes of childhood arthritis throughout the world: an observational cohort study

2019

Made available in DSpace on 2019-10-05T16:54:20Z (GMT). No. of bitstreams: 0 Previous issue date: 2019-04-01 IRCCS Istituto Giannina Gaslini Background To our knowledge, the characteristics and burden of childhood arthritis have never been studied on a worldwide basis. We aimed to investigate, with a cross-sectional study, the prevalence of disease categories, treatment methods, and disease status in patients from across different geographical areas and from countries with diverse wealth status. Methods In this multinational, cross-sectional, observational cohort study, we asked international paediatric rheumatologists from specialised centres to enrol children with a diagnosis of juvenile …

Malemedicine.medical_specialtyChildhood arthritisCross-sectional studyPopulationGlobal HealthPediatrics03 medical and health sciences0302 clinical medicine030225 pediatricsEpidemiologymedicineDevelopmental and Educational PsychologyJournal ArticleHumansPediatrics Perinatology and Child Health; Developmental and Educational Psychology030212 general & internal medicineHealthcare DisparitiesChildeducationDisease burdenPain MeasurementRetrospective Studieseducation.field_of_studyOligoarthritisbusiness.industryPerinatology and Child HealthJuvenile idiopathic arthritismedicine.diseaseJUVENILE IDIOPATHIC ARTHRITIS; OF-RHEUMATOLOGY RECOMMENDATIONS; DISEASE-ACTIVITY SCORE; DEFINING CRITERIA; CLASSIFICATION; CHILDREN; EPIDEMIOLOGY; VALIDATION; COUNTRIES; VALIDITYArthritis Juvenilechildhood arthritisphenotypic variabilityobservational cohort studyCross-Sectional StudiesBiological Variation PopulationSettore MED/38 - PEDIATRIA GENERALE E SPECIALISTICAAntirheumatic AgentsChild PreschoolPediatrics Perinatology and Child HealthQuality of LifeFemalePolyarthritisJuvenile idiopatic arthritis of-rheumatology recommentadions disease-activity score defining criteria classification children epidemiology validation countries validitybusinessDemographyCohort study
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Development and Implementation of the AIDA International Registry for Patients With Undifferentiated Systemic AutoInflammatory Diseases

2022

ObjectiveThis paper points out the design, development and deployment of the AutoInflammatory Disease Alliance (AIDA) International Registry dedicated to pediatric and adult patients affected by Undifferentiated Systemic AutoInflammatory Diseases (USAIDs).MethodsThis is an electronic registry employed for real-world data collection about demographics, clinical, laboratory, instrumental and socioeconomic data of USAIDs patients. Data recruitment, based on the Research Electronic Data Capture (REDCap) tool, is designed to obtain standardized information for real-life research. The instrument is endowed with flexibility, and it could change over time according to the scientific acquisitions an…

RegistrySettore MED/16 - REUMATOLOGIAprecision medicinerare diseasesGeneral Medicinepersonalized medicineautoinflammatory diseasesInternational RegistrySettore MED/38 - Pediatria Generale E Specialisticaautoinflammatory diseaseAutoinflammationHuman medicineInternational Registry; autoinflammatory diseases; personalized medicine; precision medicine; rare diseasesautoinflammatory diseases; International Registry; personalized medicine; precision medicine; rare diseases
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American College of Rheumatology Provisional Criteria for Clinically Relevant Improvement in Children and Adolescents With Childhood-Onset Systemic L…

2019

OBJECTIVE: To develop a Childhood Lupus Improvement Index (CHILI) as a tool to measure response to therapy in childhood-onset systemic lupus erythematosus (cSLE), with a focus on clinically relevant improvement (CRIc SLE ). METHODS: Pediatric nephrology and rheumatology subspecialists (n = 213) experienced in cSLE management were invited to define CRIc SLE and rate a total of 433 unique patient profiles for the presence/absence of CRIc SLE . Patient profiles included the following cSLE core response variables (CRVs): global assessment of patient well-being (patient-global), physician assessment of cSLE activity (MD-global), disease activity index score (here, we used the Systemic Lupus Eryt…

medicine.medical_specialtyOutcome AssessmentHealth Care/methodsAdolescentDelphi TechniqueAntirheumatic Agents/therapeutic useSeverity of Illness IndexChild healthArticle03 medical and health sciences0302 clinical medicineRheumatologyInternal medicineSeverity of illnessOutcome Assessment Health CaremedicinePediatric nephrologyHumansLupus Erythematosus Systemicskin and connective tissue diseasesChild030203 arthritis & rheumatologySystemic lupus erythematosusLupus erythematosusLupus ErythematosusReceiver operating characteristicbusiness.industryConsensus conferencechildhood-onset systemic lupus erythematosusOutcome Assessment Health Care/methodsmedicine.diseaseRheumatologyRheumatologySystemic lupus erythematosusautoimmune inflammatory diseaseAntirheumatic AgentsLupus Erythematosus Systemic/drug therapySystemic/drug therapybusinessAlgorithmsArthritis Care and Research
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