gms | German Medical Science

65th Annual Meeting of the German Association for Medical Informatics, Biometry and Epidemiology (GMDS), Meeting of the Central European Network (CEN: German Region, Austro-Swiss Region and Polish Region) of the International Biometric Society (IBS)

06.09. - 09.09.2020, Berlin (online conference)

Overview of data sharing platforms and their opportunities

Meeting Abstract

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  • Marcia Levenstein - Vivli, Cambridge, United States

Deutsche Gesellschaft für Medizinische Informatik, Biometrie und Epidemiologie. 65th Annual Meeting of the German Association for Medical Informatics, Biometry and Epidemiology (GMDS), Meeting of the Central European Network (CEN: German Region, Austro-Swiss Region and Polish Region) of the International Biometric Society (IBS). Berlin, 06.-09.09.2020. Düsseldorf: German Medical Science GMS Publishing House; 2021. DocAbstr. 117

doi: 10.3205/20gmds117, urn:nbn:de:0183-20gmds1171

Published: February 26, 2021

© 2021 Levenstein.
This is an Open Access article distributed under the terms of the Creative Commons Attribution 4.0 License. See license information at http://creativecommons.org/licenses/by/4.0/.


Outline

Text

The ability to access data, including summary-level and individual patient-level data (IPD) from completed clinical trials, is vital to continuous learning in medical research. Without access to the data, there is a limited underlying evidence base to expand on existing knowledge. The move towards open science, in particular, data sharing via platforms that includes clinical trial data, is an emerging trend over the past several years. These platforms provide the scientific community with access to clinical trial repositories across a diverse group of multi-stakeholders including industry, academic institutions, government and non-profits. Data sharing that includes individual patient-level data should be conducted in a way that respects study participants while balancing privacy and any risk of re-identification. In this talk I will provide an overview of existing data sharing platforms and the scientific opportunities they provide. I will provide a case study, to demonstrate how managed access may be implemented and safeguards put in place to ensure the responsible sharing of data. I will highlight the types of research questions posed and the impact from the ability to access IPD.

Senior Advisor for Vivli

The authors declare that an ethics committee vote is not required.