@inproceedings{0a351de6e8684c2f8dc5f450cf9daf86,
title = "Comparative Assessment of Completeness of CDISC Controlled Terminology",
abstract = "The CDISC Controlled Terminology (CT) defines the terms that may be used to represent clinical trial data in the CDISC standards. Despite its unique importance, there has been limited systematic examination of the coverage of this terminology. In this work, we performed an assessment of the completeness of CDISC CT's coverage by comparing clinical outcomes for multiple sclerosis (MS) available in CDISC CT with two independent high-fidelity benchmarks: (1) 71 expert-selected outcomes catalogued by the National Institute of Neurological Disorders and Stroke (NINDS), and, (2) 66 common outcomes used in MS trials registered on ClinicalTrials.gov (CTG). We employed a semi-automated search and term-mapping process to identify possible CDISC equivalents to the benchmarks' measures. We found that 55% of the NINDS outcomes and 52% of the CTG outcomes are absent from the CDISC Terminology, indicating a need for expanding the terminology to take into account other established standards and real-world practice.",
keywords = "CDISC, Multiple Sclerosis, Outcome Measures",
author = "Anas Elghafari and Joseph Finkelstein",
note = "Publisher Copyright: {\textcopyright} 2022 International Medical Informatics Association (IMIA) and IOS Press.; 18th World Congress on Medical and Health Informatics: One World, One Health - Global Partnership for Digital Innovation, MEDINFO 2021 ; Conference date: 02-10-2021 Through 04-10-2021",
year = "2022",
month = jun,
day = "6",
doi = "10.3233/SHTI220042",
language = "English",
series = "Studies in Health Technology and Informatics",
publisher = "IOS Press BV",
pages = "111--115",
editor = "Paula Otero and Philip Scott and Martin, {Susan Z.} and Elaine Huesing",
booktitle = "MEDINFO 2021",
address = "Netherlands",
}