DELAD Workshop 2022

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General Details

This workshop is organised by: Henk van den Heuvel; CLST Radboud University, the Netherlands; Nicola Bessell,  University College Cork, Ireland; Katarzyna Klessa, Adam Mickiewicz university in Poznan, Poland; Alice Lee, University College Cork, Ireland; Satu Saalasti, University of Helsinki, Finland. 
 
Date: 22 - 23 September 2022
Time: from 13:00 to 17:15
Location: Online, Zoom link will be sent to registered participants

The workshop is organised in collaboration with CLARIN ERIC

About

Corpora of speech of individuals with communication disorders (CSD) are hard to obtain. They are costly to collect and difficult to share due to privacy issues. Moreover, they are often small in size and very specific in terms of communication impairments addressed. These factors make re-use a challenge on the one hand, and a necessity on the other.

In the beginning, two of us (Ball & Müller) organised two workshops in Linköping, Sweden, in 2015 and 2016, in which available resources and issues related to accessibility were inventorised. These workshops resulted in the DELAD initiative (see http://delad.ruhosting.nl/).  From these workshops it was concluded (1) that only a minority of existing CSD can be made accessible due to privacy constraints, and (2) that we now have limited knowhow to collect new CSD that can be shared according to FAIR principles, (3) that the CLARIN infrastructure is indispensable for this purpose.

A third workshop was then organised in 2017 in Cork, Ireland with the support of CLARIN. Selected group of experts in communication disorders research and representatives from the CLARIN data centres were brought together to find solutions to issues such as design and implementation of a data repository, data type and formats, metadata categories and formats, IPR/ethics/consent forms, anonymization, as well as best practices and guidelines for data collection. The action plan resulting from the workshop included concrete initiatives related to the topics. 

In January 2019 a fourth workshop was organised in Utrecht, the Netherlands. Key topics were legal and ethical aspects of collecting and hosting CSD and the establishment of relevant requirements for the infrastructure for securely sharing CSD. In January 2021 we organised a first online workshop and we will continue this in September this year.

Here are the topics for our next DELAD workshop:

  • Recent developments at ACE / DELAD for support of sharing CDS
  • Sharing clinical data: Obtaining clinical data via hospitals vs Obtaining data outside clinical institutes from alternative organisations
  • The impact of the Data Governance Act & Data Altruism 
  • Follow up on voice pseudonimisation

And of course there will be plenty of time for researchers’ presentations on their data and options to share these.

The workshop will be very interactive and participants are invited to actively participate in the discussions.


How to Join

  • Participation is upon registration, you can register at this link. At registration please indicate: your research topics, which CSD you would like to share and if you would like to give a short presentation about your research topic or CSD during the workshop.
  • Registration deadline 9 September 
  • Maximum number of participants: 60 

Programme

Thu 22 September 2022 (all times in CEST)

13:00 - 13:15 Welcome

13:15 - 14:45:  Presentations by researchers about the current status of their CDS and the potential of ACE for sharing their CDS

15:00 - 16:00: Recent developments at ACE / DELAD for support of sharing CDS

16:00 - 17:00: Follow up on voice pseudonimisation (Rob van Son)

 

Fri 23 September 2022 (all times in CEST)

13:00 - 13:15 Welcome / wrap up day 1

13:15 - 14:45:  Presentations by researchers about the current status of their CDS and the potential of ACE for sharing their CDS

15:00 - 16:00: The impact of the Data Governance Act & Data Altruism (Pawel Kamocki)

16:00 - 17:00: Lessons learnt from the use of the data sharing template of Dutch Academic hospitals (Anne Jan Sikkema)

17:00 - 17:15: Wrap up / follow up actions


Contacts

Local organizers: