TY - JOUR T1 - SHARP: Enabling generation of real-world evidence on a pan-European scale to improve the lives of individuals with severe asthma JF - ERJ Open Research JO - erjor DO - 10.1183/23120541.00064-2021 SP - 00064-2021 AU - Job J.M.H. van Bragt AU - Susanne Hansen AU - Ratko Djukanovic AU - Elisabeth H.D. Bel AU - Anneke ten Brinke AU - Scott S. Wagers AU - Anke H. Maitland-van der Zee AU - Celeste Porsbjerg A2 - , Y1 - 2021/01/01 UR - http://openres.ersjournals.com/content/early/2021/03/11/23120541.00064-2021.abstract N2 - Introduction Real world evidence is important to help unravel unanswered problems in severe asthma and is valuable to better understand the patient experience and common clinical practice.Aim The Severe Heterogeneous Asthma Registry, Patient-centred (SHARP) Clinical Research Collaboration (CRC) is created as a network of national registries and severe asthma centres that work together to perform registry based real world research and clinical studies on a pan-European scale.The CRC Such collaboration requires a new, innovative design to overcome the many issues that arise with large-scale data collection across national borders. SHARP has developed a platform that offers a federated analysis approach where national registry data are transformed and integrated into a common data model (CDM). The CDM then allows a local analysis of de-identified patient data and subsequent aggregate (meta-)analysis. To facilitate an easily accessible way to set up new registries, SHARP enables new registries to take part in a central database, based on already proven technology. Next to being economical, this linkage ensures data from different SHARP central members to be comparable.The Future Technological advancements lead to an ever-expanding rate of patient data that will be collected; with the collective effort of the pan-European severe asthma research community SHARP hopes to ensure that they are well equipped to enter a new era of medical research, with the ultimate goal to positively impact the lives of patients with severe asthma.FootnotesThis manuscript has recently been accepted for publication in the ERJ Open Research. It is published here in its accepted form prior to copyediting and typesetting by our production team. After these production processes are complete and the authors have approved the resulting proofs, the article will move to the latest issue of the ERJOR online. Please open or download the PDF to view this article.Conflict of Interest: Dr. van Bragt has nothing to disclose.Conflict of Interest: Dr. Hansen has nothing to disclose.Conflict of Interest: Dr Djukanovic reports receiving fees for lectures at symposia organised by Novartis, AstraZeneca and TEVA, consultation for TEVA and Novartis as member of advisory boards, and participation in a scientific discussion about asthma organised by GlaxoSmithKline. He is a co-founder and current consultant, and has shares in Synairgen, a University of Southampton spin out company.Conflict of Interest: Dr. Bel reports grants and personal fees from GlaxoSmithKline, AstraZeneca, Novartis, Teva, personal fees from Sanofi/Regeneron, Sterna, Chiesi, outside the submitted work.Conflict of Interest: Dr. ten Brinke reports grants outside the submitted work from AstraZeneca, GSK and TEVA, institutional fees from Lectures from AstraZeneca, GSK ,TEVA, and Sanofi and institutional fees from Research Advisory Boards: GSK, Sanofi, TEVA, AstraZeneca.Conflict of Interest: S.S. Wagers reports consulting fees for work done on the SHARP project from the European Respiratory Society (ERS); and consulting frees from Kings College Hospital NHS Foundation Trust, Academic Medical Research, AMC Medical Research BV, Asthma UK, Athens Medical School, Boehringer Ingelheim International GmbH, CHU de Toulouse, CIRO, DS Biologicals Ltd, École Polytechnique Fédérale de Lausanne, ERS, FISEVI, Fluidic Analytics Ltd, Fraunhofer IGB, Fraunhofer ITEM, GlaxoSmithKline Research & Development Ltd, Holland & Knight, Karolinska Institutet Fakturor, KU Leuven, Longfonds, the National Heart & Lung Institute, Novartis Pharma AG, Owlstone Medical Limited, PExA AB, UCB Biopharma SPRL, UCB Biosciences GmbH, Umeå University, University Hospitals Southampton NHS Foundation Trust, Università Campus Bio-Medico di Roma, Universita Cattolica Del Sacro Cuore, Universität Ulm, the University of Bern, the University of Edinburgh, the University of Hull, the University of Leicester, the University of Loughborough, the University of Luxembourg, the University of Manchester, the University of Notthingham, Vlaams Brabant, Dienst Europa, Imperial College London, Boehringer Ingelheim, Breathomix, Gossamer Bio, AstraZeneca, CIBER, OncoRadiomics, the University of Leiden, the University of Wurzburg, Chiesi Pharmaceutical, the University of Liege, Teva Pharmacauticals and Sanofi, outside the submitted work.Conflict of Interest: AHM has received research grants outside the submitted work from GSK, Boehringer Íngelheim and Vertex, she is the PI of a P4O2 (Precision Medicine for more Oxygen) public private partnership sponsored by Health Holland involving many private partners that contribute in cash and/or in kind (Boehringer Ingelheim, Breathomix, Fluidda, Ortec Logiqcare, Philips, Quantib-U, Smartfish, SODAQ, Thirona, TopMD and Novartis), and she has served in advisory boards for AstraZeneca, GSK and Boehringer Ingelheim with money paid to her institution.Conflict of Interest: Dr. Porsbjerg has nothing to disclose. 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