title: Changing requirements and resulting needs for IT-infrastructure for longitudinal research in the neurosciences.
abstract: The observation of growing "difficulties" in IT-infrastructures in neuroscience research during the last years led to a search for reasons and an analysis on how this phenomenon is reflected in the scientific literature. With a retrospective analysis of nine examples of multicenter research projects in the neurosciences and a literature review the observation was systematically analyzed. Results show that the rise in complexity mainly stems from two reasons: (1) more and more need for information on quality and context of research data (metadata) and (2) long-term requirements to handle the consent and identity/pseudonyms of study participants and biomaterials in relation to legal requirements. The combination of these two aspects together with very long study times and data evaluation periods are components of the subjectively perceived "difficulties". A direct consequence of this result is that big multicenter trials are becoming part of integrated research data environments and are not standing alone for themselves anymore. This drives up the resource needs regarding the IT-infrastructure in neuroscience research. In contrast to these findings, literature on this development is scarce and the problem probably underestimated.
authors.affiliation: University Medical Center Göttingen, Department of Medical Informatics, Robert-Koch-Str. 40, 37075 Göttingen, Germany.
authors.forename: Karoline
authors.initials: K
authors.lastname: Buckow
authors.affiliation: University Medical Center Göttingen, Department of Medical Informatics, Robert-Koch-Str. 40, 37075 Göttingen, Germany.
authors.forename: Matthias
authors.initials: M
authors.lastname: Quade
authors.affiliation: University Medical Center Göttingen, Department of Medical Informatics, Robert-Koch-Str. 40, 37075 Göttingen, Germany.
authors.forename: Otto
authors.initials: O
authors.lastname: Rienhoff
authors.affiliation: University Medical Center Göttingen, Department of Medical Informatics, Robert-Koch-Str. 40, 37075 Göttingen, Germany. Electronic address: sara.nussbeck@med.uni-goettingen.de.
authors.forename: Sara Y
authors.initials: SY
authors.lastname: Nussbeck
mesh_terms: D035843:Biomedical Research / Q000379:methods; D006801:Humans; D008137:Longitudinal Studies; D008490:Medical Informatics / Q000379:methods*; D009488:Neurosciences / Q000379:methods*
keywords: Data quality; IT-infrastructure; Identity management; Infrastructure methodology; Metadata; Neuroscience