Single Hub And Access Point For Pediatric Rheumatology In Europe Research Articles

Recommendations for the Management of Uveitis Associated With Juvenile Idiopathic Arthritis: The Czech and Slovak adaptation of SHARE Initiative.

Juvenile idiopathic arthritis (JIA) is the most common rheumatic disease in children and uveitis is its most important extra-articular manifestation. Evidence-based recommendations are available only to alimited extent and therefore JIA associated uveitis management is mostly based on physicians experience. Consequently, treatment practices differ widely, both nationally and internationally. Therefore, an effort to optimize and publish recommendations for the care of children and young adults with rheumatic diseases was launched in 2012 as part of the international project SHARE (Single Hub and Access Point for Pediatric Rheumatology in Europe) to facilitate clinical practice for paediatricians and (paediatric) rheumatologists. The aim of this work was to translate published international SHARE recommendations for the diagnosis and treatment of JIA associated uveitis and to adapt them for use in the Czech and Slovak Republics. International recommendations were developed according to the standard methodology of the European League against Rheumatism (EULAR) by agroup of nine experienced paediatric rheumatologists and three experts in ophthalmology. It was based on asystematic literature review and evaluated in the form of an online survey and subsequently discussed using anominal group technique. Recommendations were accepted if > 80% agreement was reached (including all three ophthalmologists). Atotal of 22 SHARE recommendations were accepted: 3 on diagnosis, 5 on disease activity assessment, 12 on treatment and 2 on future recommendations. Translation of the original text was updated and modified with data specific to the czech and slovak health care systems and supplemented with aproposal for aprotocol of ophthalmological dispensarization of paediatric JIA patients and atreatment algorithm for JIA associated uveitis. Conclusion: The aim of the SHARE initiative is to improve and standardize care for paediatric patients with rheumatic diseases across Europe. Therefore, recommendations for the diagnosis and treatment of JIA-associated uveitis have been formulated based on the evidence and agreement of leading European experts in this field.

SHARE – workpackage 5: evidence based recommendations for diagnosis and treatment of juvenile dermatomyositis

Juvenile Dermatomyositis is a rare Pediatric Rheumatic Disease, associated with significant morbidity. Evidence-based guidelines are sparse and management is mostly based on physician’s experience. Consequently, treatment regimens differ throughout Europe. In 2012, a European initiative called SHARE (Single Hub and Access point for pediatric Rheumatology in Europe) was launched to optimize and disseminate diagnostic and management regimens in Europe for children and young adults with rheumatic diseases.

SHARE – workpackage 5: development of best practices of diagnosis and treatment for paediatric rheumatic diseases throughout Europe

Paediatric rheumatic diseases (PRD) form a group of (rare) diseases that can lead to significant morbidity. Evidence-based guidelines are sparse and treatment regimens differ throughout Europe. In 2012, a European initiative called SHARE (Single Hub and Access point for pediatric Rheumatology in Europe) was granted by the European Agency for Health and Consumers (project number 2011 1202) to optimize and disseminate diagnostic and management regimens in Europe for children with PRD.

SHARE – workpackage 5: evidence based recommendations for diagnosis and treatment of juvenile localized scleroderma and juvenile systemic sclerosis

Juvenile Localized Scleroderma (JLS) and Juvenile Systemic Sclerosis (JSSc) form a group of rare pediatric diseases that can lead to significant morbidity. Evidence-based guidelines are sparse and management is mostly based on physician’s experience. Consequently, treatment regimens differ throughout Europe. In 2012, a European initiative called SHARE (Single Hub and Access point for pediatric Rheumatology in Europe) was launched to optimize and disseminate diagnostic and management regimens in Europe for children and young adults with rheumatic diseases.

Evidence based recommendations for diagnosis and treatment of tumor necrosis factor receptor-1 associated periodic syndrome (TRAPS)

Tumor necrosis factor receptor-1 associated periodic syndrome (TRAPS) is a rare hereditary autoinflammatory syndrome that can lead to significant morbidity. Evidence-based guidelines are lacking and management is mostly based on physician’s experience. Consequently, treatment regimens differ throughout Europe. In 2012, a European initiative called SHARE (Single Hub and Access point for pediatric Rheumatology in Europe) was launched to optimize and disseminate diagnostic and management regimens in Europe for children and young adults with rheumatic diseases.

Evidence based recommendations for diagnosis and treatment of cryopyrin-associated periodic syndromes (CAPS)

Cryopyrin-associated periodic syndromes (CAPS) is a group of rare monogenetic autoinflammatory disorders. Evidence-based guidelines are lacking and management is mostly based on physician’s experience. Consequently, treatment regimens differ throughout Europe. In 2012, a European initiative called SHARE (Single Hub and Access point for pediatric Rheumatology in Europe) was launched to optimize and disseminate diagnostic and management regimens in Europe for children and young adults with rheumatic diseases.

Share – Workpackage 5: evidence based recommendations for diagnosis and treatment of juvenile idiopathic arthritis

Juvenile Idiopathic Arthritis (JIA) is one of the most common chronic pediatric rheumatic diseases (PRD). As is the case for most PRD's, evidence-based guidelines are sparse and management is based to great extent on physician’s experience. Moreover, there are differences between nations regarding availability and financing of biological therapies. Consequently, treatment regimens differ throughout Europe. In 2012, a European initiative called SHARE (Single Hub and Access point for pediatric Rheumatology in Europe) was launched to optimize and disseminate diagnostic and management regimens in Europe for children and young adults with rheumatic diseases.

Evidence based recommendations for diagnosis and management of mevalonate kinase defiency (MKD)

Mevalonate kinase deficiency (MKD) is a rare hereditary autoinflammatory syndrome that can lead to significant morbidity. Evidence-based guidelines are lacking and management is mostly based on physician’s experience. Consequently, treatment regimens differ throughout Europe. In 2012, a European initiative called SHARE (Single Hub and Access point for pediatric Rheumatology in Europe) was launched to optimize and disseminate diagnostic and management regimens in Europe for children and young adults with rheumatic diseases.

Evidence based recommendations for genetic diagnosis of Familial Mediterranean Fever

Familial Mediterranean Fever (FMF) is a disease that starts in childhood and can lead to significant morbidity. In 2012, a European initiative called SHARE (Single Hub and Access point for pediatric Rheumatology in Europe) has been launched to optimize and disseminate diagnostic and management regimens in Europe for children and young adults with rheumatic diseases. For FMF, attention was focused on genetics.

PReS-FINAL-1015: A systematic literature review on diagnosis and treatment of pediatric rheumatic diseases: a shared initiative

Pediatric Rheumatic Diseases (PRD) represent a group of rare diseases that can lead to significant morbidity. As is the problem with many rare diseases, evidence-based guidelines are lacking and treatment is mostly based on physician experience. Consequently, treatment regiments differ throughout Europe. This year, a new project called SHARE (Single Hub and Access point for pediatric Rheumatology in Europe) was launched to describe what is needed for optimal diagnosis and treatment for children and young adults with rheumatic disease. This project tackles problems across different fields, ranging from access to resources to ethical consideration to quality and uniformity of health care.