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SHARP: enabling generation of real-world evidence on a pan-European scale to improve the lives of individuals with severe asthma

SHARP: enabling generation of real-world evidence on a pan-European scale to improve the lives of individuals with severe asthma
SHARP: enabling generation of real-world evidence on a pan-European scale to improve the lives of individuals with severe asthma

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.

2312-0541
00064-2021
Van Bragt, Job J.m.h.
4ff2e1bf-8229-4266-8b63-08a29b2ba011
Hansen, Susanne
4731f44d-2f8c-4ade-bafd-74d0ce2902ca
Djukanovic, Ratko
d9a45ee7-6a80-4d84-a0ed-10962660a98d
Bel, Elisabeth H.d.
0bd61693-712a-45f4-9b21-4a90e85515e7
Ten Brinke, Anneke
49ec2aa4-bbd9-4d3f-828d-762c5dd6695a
Wagers, Scott S.
4210bc1c-ebd9-41a2-be31-b12bfa2b8c3c
Maitland-van Der Zee, Anke H.
9e203186-acd6-480c-beb6-fe30ed0353d3
Porsbjerg, Celeste
93ed020b-0d7f-4c14-98b9-f13c71fb85e4
Van Bragt, Job J.m.h.
4ff2e1bf-8229-4266-8b63-08a29b2ba011
Hansen, Susanne
4731f44d-2f8c-4ade-bafd-74d0ce2902ca
Djukanovic, Ratko
d9a45ee7-6a80-4d84-a0ed-10962660a98d
Bel, Elisabeth H.d.
0bd61693-712a-45f4-9b21-4a90e85515e7
Ten Brinke, Anneke
49ec2aa4-bbd9-4d3f-828d-762c5dd6695a
Wagers, Scott S.
4210bc1c-ebd9-41a2-be31-b12bfa2b8c3c
Maitland-van Der Zee, Anke H.
9e203186-acd6-480c-beb6-fe30ed0353d3
Porsbjerg, Celeste
93ed020b-0d7f-4c14-98b9-f13c71fb85e4

Van Bragt, Job J.m.h., Hansen, Susanne, Djukanovic, Ratko, Bel, Elisabeth H.d., Ten Brinke, Anneke, Wagers, Scott S., Maitland-van Der Zee, Anke H. and Porsbjerg, Celeste (2021) SHARP: enabling generation of real-world evidence on a pan-European scale to improve the lives of individuals with severe asthma. ERJ Open Research, 7 (2), 00064-2021. (doi:10.1183/23120541.00064-2021).

Record type: Article

Abstract

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.

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00064-2021.full - Version of Record
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Accepted/In Press date: 2 February 2021
Published date: 1 April 2021

Identifiers

Local EPrints ID: 450434
URI: http://eprints.soton.ac.uk/id/eprint/450434
ISSN: 2312-0541
PURE UUID: 67f976ca-c504-4469-8a9f-ce117866302c
ORCID for Ratko Djukanovic: ORCID iD orcid.org/0000-0001-6039-5612

Catalogue record

Date deposited: 28 Jul 2021 16:31
Last modified: 12 Nov 2021 02:34

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Contributors

Author: Job J.m.h. Van Bragt
Author: Susanne Hansen
Author: Elisabeth H.d. Bel
Author: Anneke Ten Brinke
Author: Scott S. Wagers
Author: Anke H. Maitland-van Der Zee
Author: Celeste Porsbjerg

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