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Research data repositories and data centres are becoming more and more important as infrastructures in academic research. The article introduces the Humanities’ research data repository GAMS, starting with the system architecture to preservation policy and content policy. Challenges of data centres and repositories and the general and domain-specific approaches and solutions are outlined. Special emphasis lies on the sustainability and long-term perspective of such infrastructures, not only on the technical but above all on the organisational and financial level.

"Die Reichskrone des Heiligen Römischen Reiches ist eines der wichtigsten Symbole europäischer Geschichte. Heute ist sie Teil der Sammlungen des Kunsthistorischen Museums (KHM) in Wien. Im Zuge des vom KHM initiierten CROWN-Projekts wird eine umfassende Analyse der Reichskrone durchgeführt. Ziel dieser Analyse ist es nicht nur den konservatorischen Status des Objektes zu bestimmen, sondern auch die Diskussion um Entstehungszeit und Entstehungsort voranzubringen. Dazu werden alle Bestandteile der Krone, die Platten, das Stirnkreuz, der Bügel, die Edelsteine und Zierelemente etc. aus unterschiedlicher Perspektive - naturwissenschaftlich, konservatorisch, (kunst)historisch - analysiert. Bei den im CROWN Projekt erfassten Daten handelt es sich nicht um "klassische" Sammlungsdaten, also deskriptive Daten, die Objekte in einer Sammlung beschreiben, sondern um hochspezifische Forschungsdaten. Ziel dieses Beitrags soll es sein, einen Workflow zu beschreiben, an dessen Ende eine hochstrukturierte, den FAIR-Kriterien entsprechende und LOD-fähige Ressource steht." Ein Beitrag zur 9. Tagung des Verbands "Digital Humanities im deutschsprachigen Raum" - DHd 2023 Open Humanities Open Culture.

Projektbericht

Background and objectives: Disease progression in patients with spinal muscular atrophy (SMA) has changed dramatically within the past years due to the approval of three different disease-modifying treatments. Nusinersen was the first drug to be approved for the treatment of SMA patients. Clinical trials provided data from infants with SMA type 1 and children with SMA type 2, but there is still insufficient evidence and only scarcely reported long-term experience for nusinersen treatment in ambulant patients. Here, we report data from the SMArtCARE registry of ambulant patients under nusinersen treatment with a follow-up period of up to 38 months. Methods: SMArtCARE is a disease-specific registry in Germany, Austria and Switzerland. Data are collected as real-world data during routine patient visits. Our analysis included all patients under treatment with nusinersen able to walk independently before start of treatment with focus on changes in motor function. Results: Data from 231 ambulant patients were included in the analysis. During the observation period, 31 pediatric walkers (27.2%) and 31 adult walkers (26.5%) experienced a clinically meaningful improvement of≥30 m in the 6-Minute-Walk-Test. In contrast, only five adult walkers (7.7%) showed a decline in walking distance≥30 m, and two pediatric walkers (1.8%) lost the ability to walk unassisted under treatment with nusinersen. HFMSE and RULM scores improved in pediatric and remained stable in adult patients. Conclusion: Our data demonstrate a positive effect of nusinersen treatment in most ambulant pediatric and adult SMA patients. We not only observed a stabilization of disease progression or lack of deterioration, but clinically meaningful improvements in walking distance.

"Seit beinahe 20 Jahren verwaltet und publiziert das Repositorium GAMS Forschungsdaten aus den Geisteswissenschaften und dem Kulturerbebereich. Derzeit enth��lt das Langzeitarchiv etwa 115.000 annotierte digitale Objekte aus mehr als 60 Projekten. Dies reicht von digitalen Editionen oder Textsammlungen (z.B. Briefe, mittelalterliche Rechnungsb��cher) ��ber Bildsammlungen (z.B. historische Fotografien und Postkarten) bis hin zu digitalisierten musealen Sammlungen (z.B. arch��ologische Artefakte oder andere Museumsobjekte) (GAMS 2021). Dabei liegt das Augenmerk sowohl auf der langfristigen Sicherung und Zug��nglichmachung von Ressourcen wie auch auf dem nachhaltigen Umgang mit den bearbeiteten Forschungsdaten. Dom��nenspezifische Repositorien m��ssen dabei einen Ausgleich zwischen langzeittauglicher und somit eher konservativer Entwicklung und dem Einsatz aktueller Technologien finden. Das Poster wird den konzeptionellen Rahmen dieser Forschungsdateninfrastruktur vorstellen und L��sungsans��tze aus diesem Widerspruch diskutieren, die besonders auf die Migration der Kernkomponenten fokussieren. " Ein Betrag zur 8. Tagung des Verbands "Digital Humanities im deutschsprachigen Raum" - DHd 2022 Kulturen des digitalen Ged��chtnisses.

Zu Beginn jedes neuen Projektes in den Digitalen Geisteswissenschaften steht die Frage nach der adäquaten Modellierung der Forschungsdaten. Während im Förderantrag häufig bereits die Nennung vom XML/TEI für Textquellen ausreichend ist, stellt sich das Unterfangen zu Beginn der praktischen Arbeit meist komplizierter dar: Schon die TEI (TEI Consortium 2021) alleine bietet zahlreiche Möglichkeiten ähnliche Sachverhalte zu modellieren und die gewählte Strategie muss dabei jeweils auf das Material, die Forschungsfrage und in weiterer Folge die Archivierung und Weiterverwendung der Daten Rücksicht nehmen. Der hier vorliegende Beitrag stellt die Herausforderungen und Lösungsansätze anhand der Briefkorrespondenz von Hugo Schuchardt vor. Ein Beitrag zur 8. Tagung des Verbands "Digital Humanities im deutschsprachigen Raum" - DHd 2022 Kulturen des digitalen Gedächtnisses.

Data de publicació electrònica: 23-03-2022 Background and purpose: The therapeutic landscape of spinal muscular atrophy (SMA) has changed dramatically during the past 4 years, but treatment responses differ remarkably between individuals, and therapeutic decision-making remains challenging, underlining the persistent need for validated biomarkers. Methods: We applied untargeted proteomic analyses to determine biomarkers in cerebrospinal fluid (CSF) samples of SMA patients under treatment with nusinersen. Identified candidate proteins were validated in CSF samples of SMA patients by Western blot and enzyme-linked immunosorbent assay. Furthermore, levels of peripheral neurofilament heavy and light chain were determined. Results: Untargeted proteomic analysis of CSF samples of three SMA type 1 patients revealed the lysosomal protease cathepsin D as a candidate biomarker. Subsequent validation analysis in a larger cohort of 31 pediatric SMA patients (type 1, n = 12; type 2, n = 9; type 3, n = 6; presymptomatically treated, n = 4; age = 0-16 years) revealed a significant decline of cathepsin D levels in SMA patients aged ≥2 months at the start of treatment. Although evident in all older age categories, this decline was only significant in the group of patients who showed a positive motor response. Moreover, downregulation of cathepsin D was evident in muscle biopsies of SMA patients. Conclusions: We identified a decline of cathepsin D levels in CSF samples of SMA patients under nusinersen treatment that was more pronounced in the group of "treatment responders" than in "nonresponders." We believe that our results indicate a suitability of cathepsin D levels as a possible biomarker in SMA also in older patients, in combination with analysis of peripheral neurofilament light chain in adolescents or alone in adult patients. Funding: H.L. receives support from the Canadian Institutes of Health Research (Foundation Grant FDN-167281), the Canadian Institutes of Health Research and Muscular Dystrophy Canada (Network Catalyst Grant for NMD4C), the Canada Foundation for Innovation (CFI-JELF 38412), and the Canada Research Chairs program (Canada Research Chair in Neuromuscular Genomics and Health, 950-232279). This work was also supported by a grant of the French Muscular Dystrophy Association (AFM-Téléthon;#21466) to A.R. The work of B.W. is supported by the German Research Foundation (Wi945/17-1, SFB 1451 [project-ID 431549029–A01] and GRK1960 [project ID 233886668]), the European Research Council under the European Union's Horizon 2020 research and innovation program under the Marie Skłodowska-Curie grant agreement 956185 (SMABEYOND), and the Center for Molecular Medicine Cologne (project No C18)

For almost 20 years, the digital repository GAMS (Geisteswissenschaftliches Asset Management System) has been providing long-term preservation of Humanities’ resources offering both a technical solution and a way of achieving sustainability in the handling of research data. Such domain-specific digital repositories rely on specialised design principles and a strategic orientation to balance the need for long-term sustainability and the use of advanced technologies. The repository solely relies on open source software due to its commitment to open access and open science. Its design principles intend to foster compliance with international best practices like the COAR Community Framework for Good Practices in Repositories (COAR 2020) and the certification guidelines of the CoreTrustSeal, and following the FAIR principles of findability, accessibility, interoperability and reusability. Long-term preservation entails migration to new software versions and reflecting advancements in technology as well as responding to security issues; increase in projects and services require a more elaborate and stable system architecture. This submission describes the conceptual framework and architecture of a large digital repository infrastructure that specialises in the preservation, management and presentation of research data in the Humanities, as well as the maintenance and migration of this exemplary research data ecosystem.

Now that the Digital Humanities (DH) are becoming a well-established research field, producing seminal publications in print as well as digital formats, the time for consolidation has come. It is noteworthy that digital tools and methods from the pioneering days of the DH are degrading and some have already vanished. Therefore, it is urgent to take action and to prevent further losses. While the necessity of high quality research data management (RDM) is encouraged or even required by funding agencies and there is an increasing awareness for long-term archiving (LTA), when it comes to primary research data, the fact that the DH exhibit a structural deficit regarding maintaining and preserving research software is at the least underestimated. In this panel, we will focus on infrastructure and institutional support. Beginning with an overview of existing strategies from the DH and beyond, we highlight selected strategies to compare how they are implemented at different institutions in terms of infrastructure, expert knowledge and also funding. We also want to evaluate the extent of institutional support that is needed to successfully sustain and archive DH projects and the software they use. We will discuss currently implemented solutions to maintain and preserve research projects and software, all of which approach the outlined problem from a different angle.

A single abstract from the DHd-2018 Book of Abstracts., Sofern eine editorische Arbeit an dieser Publikation stattgefunden hat, dann bestand diese aus der Eliminierung von Bindestrichen in Überschriften, die aufgrund fehlerhafter Silbentrennung entstanden sind, der Vereinheitlichung von Namen der Autor*innen in das Schema "Nachname, Vorname" und/oder der Trennung von Überschrift und Unterüberschrift durch die Setzung eines Punktes, sofern notwendig., {"references":["https://doi.org/10.5281/zenodo.3684897","https://github.com/DHd-Verband/DHd-Abstracts-2018"]}

A single abstract from the DHd-2016 Book of Abstracts., Sofern eine editorische Arbeit an dieser Publikation stattgefunden hat, dann bestand diese aus der Eliminierung von Bindestrichen in Überschriften, die aufgrund fehlerhafter Silbentrennung entstanden sind, der Vereinheitlichung von Namen der Autor*innen in das Schema "Nachname, Vorname" und/oder der Trennung von Überschrift und Unterüberschrift durch die Setzung eines Punktes, sofern notwendig., {"references":["https://doi.org/10.5281/zenodo.3679331","https://github.com/DHd-Verband/DHd-Abstracts-2016"]}