ADAPT researchers on the Precision ALS project, Dr. Sinéad Impey and Jonathan Turner (Trinity College Dublin) were recently awarded the “Best Paper” award at HEALTHINFO 2023, (the Eighth International Conference on Informatics and Assistive Technologies for Health-Care, Medical Support and Wellbeing) for their paper ‘Dataset, Usability and Process – Developing an Interdisciplinary, Multimodal Data Collection Tool and Platform for a Rare Disease’. The conference was held in Valencia, Spain from the 13th to the 17th Novemeber 2023.
Investigating treatment options and potential cures in rare neurological conditions requires large data sets so as to better understand disease progression. The participation of multiple clinical sites is also required so as to generate large data sets for these rare diseases, like Amyotrophic Lateral Sclerosis (ALS). This paper explores the development of a data collection tool that allows for the collection and integration of data collected at Precision ALS partner sites across Europe. In particular, the paper focuses on the requirements gathering method. This was divided into three integral pillars consisting of Dataset, Usability, and Process. The tool runs on an Android tablet and is now in use across Europe enabling the collection of data for the project.
Additional co-authors of the paper include: 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, and Orla Hardiman.
More information about the paper can be found here.
About Precision ALS:
Precision ALS is a €10 million research programme involving researchers at the SFI Research Centres ADAPT and FutureNeuro along with the TRICALS Consortium, Europe’s largest ALS research initiative. Actively participating are national and international industry partners and charities including patient organisations. Further information on this research programme can be access via their website: https://www.precisionals.ie/
