SSHOC Webinar: Sharing Datasets of Pathological Speech
Corpora and datasets of pathological speech are hard to get simply because they are hard to share. In this webinar we will present and explore several alternatives for sharing such sensitive data. The webinar is interesting for all who struggle with sharing and obtaining similar types of data.    

The focus of the webinar will be on:
 - The DELAD initiative for sharing corpora of speech disorders (CSD) among researchers, issues discussed at the workshops that DELAD had organized and the progress achieved. CLARIN Knowledge Centre on Atypical Communication Expertise and its role facilitating sharing of CSD wil be further discussed.
 - GDPR & Ethics of special category data relevant for collecting and sharing CSD.
 - Storing and sharing CSD at the The Language Archive: how storing and sharing CSD is arranged in a GDPR compliant way atthe TLA of the Max Plank Institute for Psycholinguistics and the collaboration with the Talkbank at CMU.
 - Remote Access to sensitive data: infrastructure requirements for secure Remote Access to sensitive research data with diverse legal (e.g., social media terms of service), ethical (e.g., children as subjects), and technical (e.g., audio and video) challenges and assessment of several existing platforms.
 - The CAVA (human Communication: an Audio-Visual Archive) project is a digital video repository to support the work of the international human communication research community. This resource enhances the discoverability and re-usability of expensively-created, specialist video content.
 - The curation and disclosure of pathological speech corpora: we discuss how CSD can be found through one organisation and made accessible through another and demonstrate it using the example of the Polish Cued Speech Corpus of Hearing-Impaired Children.  

ABOUT THE SPEAKERS

Henk van den Heuvel, CLST, Radboud University, Nijmegen, The Netherlands
since 1990, researcher at Radboud University Nijmegen;
since 2003, director of the Centre for Language and Speech Technology at Radboud University;
since 2016, Head of the Humanities Lab and research data officer at the Faculty of Arts;
since 2019, coordinating member of the CLARIN Knowledge Centre for Atypical Communication (ACE);
since 2017 DELAD Committee Member
specialised in management of critical and sensitive research data.

Nicola Bessell, Department of Speech and Hearing Sciences, University College Cork, Cork, Ireland 
lecturer in Speech and Hearing Sciences, UCC since 2010
research in typical and atypical phonetics and phonology, dialectology, language change
active in collection of language corpora for typical and atypical speech
UCC Social Research Ethics Committee member, 2019 - present
DELAD Committee Member, 2018 - present

Paul Trilsbeek, The Language Archive, Max Planck Institute for Psycholinguistics, Nijmegen, The Netherlands
1998-2003, Music Technologist at Radboud University Nijmegen;
Since 2003, archivist at the Max Planck Institute for Psycholinguistics, Nijmegen;
Since 2015, Head of The Language Archive, Max Planck Institute for Psycholinguistics, Nijmegen;
2009-2018 Member of the Data Seal of Approval Board;
Since 2018 Member of the CoreTrustSeal Board;
specialised in archiving and preservation of research data, in particular language data collections

Libby Bishop, GESIS-Leibniz Institute for Social Sciences, Cologne, Germany
since 2018, Coordinator for International Data Infrastructures in the Data Archive at GESIS-Leibniz Institute for Social Sciences in Germany.  
currently manages relationships between GESIS and international data infrastructures, such as the Consortium of European Social Science Data Archives.   
since 2018, Social Sciences and Humanities Open Science Cloud Project – Leader on Task 5.4 Remote Access to Secure Data.
CAVA: Human Communication: an Audio-Visual Archive–UCL–Advisory Group (c. 2009)
Forthcoming publication: “The practical and ethical challenges in acquiring and sharing digital trace data: negotiating public-private partnerships".  

Katarzyna Klessa, Adam Mickiewicz University in Poznan, Poland
since 2006, researcher at Adam Mickiewicz University in Poznan;
since 2017, member of the Programme Board of CLARIN-PL
2019: head of the project: Infant-directed and adult-directed speech: preliminary investigation with Carstens AG501 Articulograph (Polish National Science Center)
2019-2020: visiting scholar at the University of Texas at Austin, USA within the COLING project (Minority Languages, Major Opportunities. Collaborative Research, Community Engagement and Innovative Educational Tools; EU Horizon 2020 )
since 2020: participant of the project MuMoStance: Multimodal Stancetaking: Expressive Movement and Affective Stance. Political Debates in German Bundestag and Polish Sejm 
specialised in experimental phonetics, linguistic and paralinguistic features of speech, annotation & annotation mining in multimodal contexts, linguistic data collecting and sharing
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