SRUK's first Family Day is a free event for parents of children diagnosed with Scleroderma and Raynaud's - with fun activities and informative sessions
The European Union funded SHARE (Single Hub and Access point for paediatric Rheumatology in Europe) initiative, which was undertaken in 2012-2015 to improve and release guidelines for diagnosis and management of rheumatic conditions, is facilitating improvement and uniformity of care for paediatric rheumatology patients throughout Europe.
Perhaps equally important to this standardization of care was the process used for developing the recommendations, as the process helped to build a network of international experts who would work together to develop future recommendations for improving patient care, according to Dr. Sebastian Vastert, who coordinated the project together with Prof. Nico Wulffraat, both from the University Medical Centre Utrecht in the Netherlands.
SHARE recommendations have been developed for juvenile idiopathic arthritis (JIA), juvenile dermatomyositis, childhood systemic lupus erythematosus, childhood antiphospholid syndrome, all the childhoos vasculitides, and juvenile scleroderma.
“These provide evidence-based, internationally agreed upon standards of optimal care for peadiatric connective tissue disorders," Dr. Vastert and Prof. Beresford (University of Liverpool) explained, adding that the recommendations are important for ensuring that all children with rheumatic disorders receive appropriate care. “These disorders are rare and complex, and can lead to significant associated morbidity and mortality, but evidence-based guidelines have been lacking, and management is based mainly on physician experience. Consequently, treatment regimes vary widely throughout Europe," Prof. Beresford said. “ The new recommendations provide a platform for promoting uniform management and for improving outcomes."
As the SHARE initiative also involved a survey of paediatric rheumatic conditions in Europe, the SHARE project will also allow for the development of nation-specific recommendations for the treatment on each of the paediatric rheumatic conditions.
“Our evidence an consensus based recommendations will hopefully drive access to uniform and optimal care throughout Europe, including off –label therapy when appropriate according to international consensus-derived expert advice," Dr. Vastert said.
As for each of the involved paediatric rheumatic conditons, around 15-20 experts from Europe and around the world were included in the process of developing the recommendations. “The SHARE network will be invaluable for further international collaboration, both for optimisation of care and for internal collaboration in research, as well," Dr Vastert said, noting that now that the project has formally ended, SHARE will continue under the title of the Paediatric Rheumatology European Society (PReS).
The SHARE initiative has produced guidelines for the diagnosis and management of paediatric rheumatic conditions to improve and uniform care throughout Europe.
Featured in EULAR Congress News Wednesday 8th June