RT Journal Article
SR Electronic
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
FD European Respiratory Society
SP 00064-2021
DO 10.1183/23120541.00064-2021
VO 7
IS 2
A1 Job J.M.H. van Bragt
A1 Susanne Hansen
A1 Ratko Djukanovic
A1 Elisabeth H.D. Bel
A1 Anneke ten Brinke
A1 Scott S. Wagers
A1 Anke H. Maitland-van der Zee
A1 Celeste Porsbjerg
A1 ,
YR 2021
UL http://openres.ersjournals.com/content/7/2/00064-2021.abstract
AB 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.The Severe Heterogeneous Asthma Registry, Patient-centred (SHARP) Clinical Research Collaboration 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.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.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.SHARP brings together national asthma registries in Europe and enables generation of real-world evidence on severe asthma by using a common data model that aligns data from existing registries and by facilitating the development of new asthma registries https://bit.ly/3a1E42D