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Dataset, Usability and Process - Developing an Interdisciplinary, Multi-modal Data Collection Tool and Platform for a Rare Disease

Authors:
Sinéad Impey
Jonathan Turner
Frances Gibbons
Anthony Bolger
Gaye 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; motor neurone disease; agile development process; requirements gathering; data integration

Abstract:
Large data sets are required to understand disease progression, investigate treatment options and discover potential cures in rare neurological conditions such as Amyotrophic Lateral Sclerosis (ALS). Generating large data sets for such rare neurological conditions requires the participation of multiple clinical sites. The Precision ALS project is a partnership between multiple clinical sites and industry partners across Europe that seeks to collect and analyse multi-modal data collected from participants with the disease. In this paper, we describe the development of a data collection tool that allows for the collection and integration of data collected at these multiple sites. We focus particularly on the requirements gathering method, which was divided into three pillars: Dataset, Usability and Process. The data collection tool runs on an Android tablet and is now in use enabling collection of data from across Europe for the Precision ALS project.

Pages: 26 to 29

Copyright: Copyright (c) IARIA, 2023

Publication date: November 13, 2023

Published in: conference

ISSN: 2519-8491

ISBN: 978-1-68558-105-3

Location: Valencia, Spain

Dates: from November 13, 2023 to November 17, 2023