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InfoSys 2025 Congress
March 09, 2025 to March 13, 2025 - Lisbon, Portugal
- ICNS 2025, The Twenty-Second International Conference on Networking and Services
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- ENERGY 2025, The Fifteenth International Conference on Smart Grids, Green Communications and IT Energy-aware Technologies
- WEB 2025, The Thirteenth International Conference on Building and Exploring Web Based Environments
- DBKDA 2025, The Seventeenth International Conference on Advances in Databases, Knowledge, and Data Applications
- SIGNAL 2025, The Tenth International Conference on Advances in Signal, Image and Video Processing
- BIOTECHNO 2025, The Seventeenth International Conference on Bioinformatics, Biocomputational Systems and Biotechnologies
- AIHealth 2025, The Second International Conference on AI-Health
InfoWare 2025 Congress
March 09, 2025 to March 13, 2025 - Lisbon, Portugal
- ICCGI 2025, The Twentieth International Multi-Conference on Computing in the Global Information Technology
- ICWMC 2025, The Twenty-Second International Conference on Wireless and Mobile Communications
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- INTERNET 2025, The Seventeenth International Conference on Evolving Internet
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DataSys 2025 Congress
April 06, 2025 to April 10, 2025 - Valencia, Spain
- AICT 2025, The Twenty-Second Advanced International Conference on Telecommunications
- ICIW 2025, The Twentieth International Conference on Internet and Web Applications and Services
- ICIMP 2025, The Twentieth International Conference on Internet Monitoring and Protection
- SMART 2025, The Fourteenth International Conference on Smart Cities, Systems, Devices and Technologies
- IMMM 2025, The Fifteenth International Conference on Advances in Information Mining and Management
- INFOCOMP 2025, The Fifteenth International Conference on Advanced Communications and Computation
- MOBILITY 2025, The Fifteenth International Conference on Mobile Services, Resources, and Users
- SPWID 2025, The Eleventh International Conference on Smart Portable, Wearable, Implantable and Disability-oriented Devices and Systems
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ComputationWorld 2025 Congress
April 06, 2025 to April 10, 2025 - Valencia, Spain
- SERVICE COMPUTATION 2025, The Seventeenth International Conference on Advanced Service Computing
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- FUTURE COMPUTING 2025, The Seventeenth International Conference on Future Computational Technologies and Applications
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NexComm 2025 Congress
May 18, 2025 to May 22, 2025 - Nice, France
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DigitalWorld 2025 Congress
May 18, 2025 to May 22, 2025 - Nice, France
- ICDS 2025, The Nineteenth International Conference on Digital Society
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- eTELEMED 2025, The Seventeenth International Conference on eHealth, Telemedicine, and Social Medicine
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- ALLSENSORS 2025, The Tenth International Conference on Advances in Sensors, Actuators, Metering and Sensing
- SMART ACCESSIBILITY 2025, The Tenth International Conference on Universal Accessibility in the Internet of Things and Smart Environments
IARIA Congress 2025, The 2025 IARIA Annual Congress on Frontiers in Science, Technology, Services, and Applications
July 06, 2025 to July 10, 2025 - Athens, Greece
DigiTech 2025 Congress
July 06, 2025 to July 10, 2025 - Athens, Greece
- DIGITAL 2025, Advances on Societal Digital Transformation
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NexTech 2025 Congress
September 28, 2025 to October 02, 2025 - Lisbon, Portugal
- UBICOMM 2025, The Nineteenth International Conference on Mobile Ubiquitous Computing, Systems, Services and Technologies
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- SEMAPRO 2025, The Nineteenth International Conference on Advances in Semantic Processing
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- EMERGING 2025, The Seventeenth International Conference on Emerging Networks and Systems Intelligence
- DATA ANALYTICS 2025, The Fourteenth International Conference on Data Analytics
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SoftNet 2025 Congress
September 28, 2025 to October 02, 2025 - Lisbon, Portugal
- ICSEA 2025, The Twentieth International Conference on Software Engineering Advances
- ICSNC 2025, The Twentieth International Conference on Systems and Networks Communications
- CENTRIC 2025, The Eighteenth International Conference on Advances in Human-oriented and Personalized Mechanisms, Technologies, and Services
- VALID 2025, The Seventeenth International Conference on Advances in System Testing and Validation Lifecycle
- SIMUL 2025, The Seventeenth International Conference on Advances in System Simulation
- SOTICS 2025, The Fifteenth International Conference on Social Media Technologies, Communication, and Informatics
- INNOV 2025, The Fourteenth International Conference on Communications, Computation, Networks and Technologies
- AISyS 2025, The Second International Conference on AI-based Systems and Services
SocSys 2025 Congress
October 26, 2025 to October 30, 2025 - Barcelona, Spain
NetWare 2025 Congress
October 26, 2025 to October 30, 2025 - Barcelona, Spain
- SENSORCOMM 2025, The Nineteenth International Conference on Sensor Technologies and Applications
- SENSORDEVICES 2025, The Sixteenth International Conference on Sensor Device Technologies and Applications
- SECURWARE 2025, The Nineteenth International Conference on Emerging Security Information, Systems and Technologies
- AFIN 2025, The Seventeenth International Conference on Advances in Future Internet
- CENICS 2025, The Eighteenth International Conference on Advances in Circuits, Electronics and Micro-electronics
- ICQNM 2025, The Nineteenth International Conference on Quantum, Nano/Bio, and Micro Technologies
- FASSI 2025, The Eleventh International Conference on Fundamentals and Advances in Software Systems Integration
- GREEN 2025, The Tenth International Conference on Green Communications, Computing and Technologies
- HEALTHINFO 2025, The Tenth International Conference on Informatics and Assistive Technologies for Health-Care, Medical Support and Wellbeing
TechWorld 2025 Congress
October 26, 2025 to October 30, 2025 - Barcelona, Spain
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ThinkMind // International Journal On Advances in Life Sciences, volume 16, numbers 1 and 2, 2024 // View article lifsci_v16_n12_2024_6
Developing a Process for Gathering and Managing Multi-site User Feedback for a Data Collection Project in a Rare Disease Setting. Using Design Science to Explicate a Knowledge Contribution
 Authors:
Sinéad Impey
Jonathan Turner
Frances Gibbons
Anthony Bolger
Gaye Stephens Stephens
Lucy Hederman
Ciara O'Meara
Ferran De La Varga
John Kommala
Matthew Nicholson
Daniel Farrell
Emmet Morrin
Miriam Galvin
Mark Heverin
Éanna Mac Domhnaill
Robert McFarlane
Dara Meldrum
Deirdre Murray
Orla Hardiman Keywords: amyotrophic lateral sclerosis; design science; knowledge contributions; requirements gathering; data collection Abstract:
Large datasets are required to understand disease progression, investigate treatment options and discover potential cures in rare neurological conditions such as Amyotrophic Lateral Sclerosis. Generating large datasets for such rare conditions requires the participation of multiple specialist clinical sites. The Precision ALS project is a partnership between multiple specialist Amyotrophic Lateral Sclerosis clinical sites (n=10) and industry partners across Europe that seeks to collect and analyse multi-modal data collected from participants with the disease. The project is managed by an expert group comprised of clinical, technical, business, legal and interdisciplinary specialists. Adopting a design science approach, the project created an artefact – a data collection tool. This tool is used by data collectors at each specialist clinical site to capture a range of patient information, including biological and socio-economic data. Applying an iterative approach, the initial user requirements were based on extensive collaborative projects undertaken by clinical sites, which formed the basis of a bespoke worksheet. Additional modifications were introduced through project group discussions and engaging members from one of the clinical specialist sites. The lessons learned from this initial work were formulated into a knowledge contribution in the form of a process for integrating pre-existing paper-based data collection processes, additional requirement gathering and managing user feedback. The process is a way to identify and manage the early digital representation of data gathering paper worksheets, along with the volume and variety of unstructured feedback generated during a diverse range of multi-site user engagements. A central component of the process is three themes that were adapted from the initial feedback and presented as three pillars: Digital Worksheet; Usability; and Process/actors. These three pillars were embedded in a four-step information pipeline (capture, record, review and target), which provided a structure to ensure that the management of this feedback was transparent and auditable from source to decision. This paper describes the knowledge contribution of the user requirements gathering process explicated through a design science approach targeted towards the data collection tool resulting from this process. Pages: 56 to 66 Copyright: Copyright (c) to authors, 2024. Used with permission. Publication date: June 30, 2024 Published in: journal ISSN: 1942-2660
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