Towards the Standardization of Disease Registry Form Structure

Fatimetou Sidina, Hatem Bellaaj, Mohamed Jmaiel

2024

Abstract

This paper presents a set of specifications for disease registry forms that vary from one registry to another, emphasizing their standardization to ensure better interoperability and data analysis. After an in-depth review of the state-of-the-art disease registry forms, we introduce a standardized structure adhering to the essential data standards set by EPIRARE (Taruscio et al, 2014), a project funded by the European Union to improve standardization and data comparability among patient registries, while respecting all question suggestions provided by the Patient Registry Item Specifications and Metadata for Rare Disease PRISM project (Richesson, Shereff and Andrews, 2012). This structure has been validated on several registries currently in use, demonstrating a high level of accuracy.

Paper Citation

in Harvard Style

Sidina F., Bellaaj H. and Jmaiel M. (2024). Towards the Standardization of Disease Registry Form Structure. In Proceedings of the 10th International Conference on Information and Communication Technologies for Ageing Well and e-Health - Volume 1: ICT4AWE; ISBN 978-989-758-700-9, SciTePress, pages 250-257. DOI: 10.5220/0012708500003699

in Bibtex Style

@conference{ict4awe24,
author={Fatimetou Sidina and Hatem Bellaaj and Mohamed Jmaiel},
title={Towards the Standardization of Disease Registry Form Structure},
booktitle={Proceedings of the 10th International Conference on Information and Communication Technologies for Ageing Well and e-Health - Volume 1: ICT4AWE},
year={2024},
pages={250-257},
publisher={SciTePress},
organization={INSTICC},
doi={10.5220/0012708500003699},
isbn={978-989-758-700-9},
}

in EndNote Style

TY - CONF

JO - Proceedings of the 10th International Conference on Information and Communication Technologies for Ageing Well and e-Health - Volume 1: ICT4AWE
TI - Towards the Standardization of Disease Registry Form Structure
SN - 978-989-758-700-9
AU - Sidina F.
AU - Bellaaj H.
AU - Jmaiel M.
PY - 2024
SP - 250
EP - 257
DO - 10.5220/0012708500003699
PB - SciTePress