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SPACE – Severe Paediatric Asthma Collaborative in Europe
CRC Chairs : Marielle Pijnenburg (Erasmus MC - Sophia Children's Hospital, Rotterdam, The Netherlands) Franca Rusconi (Anna Meyer Children's University Hospital, Florence, Italy)
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About SPACE
The SPACE (Severe Paediatric Asthma Collaborative in Europe) clinical research collaboration was launched by the European Respiratory Society (ERS) in 2015. The core project is the creation of a multicentre registry of paediatric patients with severe asthma. It was started on the initiative of the European Medicines Agency, which observed a lack of participation of children and adolescents with severe asthma in trials of biologics, leading to reduced access to these drugs for paediatric patients. Severe asthma differs in children and adults – including mechanisms, patterns of inflammation, and pathophysiology. Thus, we cannot automatically extrapolate clinical characteristics, phenotypes, quality of life or unmet needs from severe asthma in adults to children with apparently the same clinical disease.
Specific aims
To create the SPACE registry, a European paediatric severe asthma registry by incorporating baseline and annual follow-up data to facilitate research and quality improvement initiatives across healthcare systems.
To establish a platform to enhance participation and retention of children with severe asthma in therapeutic trials of new biologics and receptor blockers specifically devoted to paediatric patients.
To build a network of researchers and clinical experts in paediatric severe asthma to guide future research and clinical priorities.
To facilitate applications to industry and European Union funding sources to build paediatric severe asthma research capacity in Europe.
Registry
The SPACE registry is aimed to record data of at least 300 children aged 6-17 with severe asthma, recruited in more than 20 specialised centres across Europe. It aims to facilitate multidisciplinary collaborative research in paediatric severe asthma.
The SPACE registry of children with severe asthma provides the opportunity:
To follow up with patients annually using the current version of the registry, which allows a comprehensive real-life description of characteristics of patients through questionnaires, spirometry, inflammation indices, respiratory medications and acute exacerbations.
To capture as large a number of patients as possible to obtain new information on the efficacy and safety of the different available biologics.
To use the registry to recruit children and adolescents into trials of new asthma therapies with ad hoc protocols.
Stakeholders
At the core of the network is the SPACE Steering Committee, which comprises the two CRC chairs and two SPACE members.
The Stakeholder board is composed of different stakeholder groups composed of clinician researchers, experts in translational research, young investigators and patient representatives.
Contact
If you are interested in more information about SPACE or would like to join the network, please contact scientific@ersnet.org.
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