The Australian Traumatic Brain Injury Initiative: Statement of Working Principles and Rapid Review of Methods to Define Data Dictionaries for Neurological Conditions.

brain injuries common data elements neurology systematic review [publication type] traumatic

Journal

Neurotrauma reports
ISSN: 2689-288X
Titre abrégé: Neurotrauma Rep
Pays: United States
ID NLM: 101773091

Informations de publication

Date de publication:
2024
Historique:
medline: 25 4 2024
pubmed: 25 4 2024
entrez: 25 4 2024
Statut: epublish

Résumé

The Australian Traumatic Brain Injury Initiative (AUS-TBI) aims to develop a health informatics approach to collect data predictive of outcomes for persons with moderate-severe TBI across Australia. Central to this approach is a data dictionary; however, no systematic reviews of methods to define and develop data dictionaries exist to-date. This rapid systematic review aimed to identify and characterize methods for designing data dictionaries to collect outcomes or variables in persons with neurological conditions. Database searches were conducted from inception through October 2021. Records were screened in two stages against set criteria to identify methods to define data dictionaries for neurological conditions (International Classification of Diseases, 11th Revision: 08, 22, and 23). Standardized data were extracted. Processes were checked at each stage by independent review of a random 25% of records. Consensus was reached through discussion where necessary. Thirty-nine initiatives were identified across 29 neurological conditions. No single established or recommended method for defining a data dictionary was identified. Nine initiatives conducted systematic reviews to collate information before implementing a consensus process. Thirty-seven initiatives consulted with end-users. Methods of consultation were "roundtable" discussion (

Identifiants

DOI: 10.1089/neur.2023.0116 PMID: 38660461 PMC: PMC11040195
pubmed: 38660461
doi: 10.1089/neur.2023.0116
pii: 10.1089/neur.2023.0116
pmc: PMC11040195
doi:

Types de publication

Journal Article

Langues

eng

Pagination

424-447

Informations de copyright

© Matthew K. Bagg et al., 2024; Published by Mary Ann Liebert, Inc.

Déclaration de conflit d'intérêts

M.K.B. has received personal fees for travel or consulting from Chiropractor's Association of Australia, Memorial University of Newfoundland, Life Ready Health Group, and Active Linc Pty Ltd. M.K.B. has received research funding from the Australian NHMRC, MRFF and RTP schemes, UNSW, and NeuRA. D.J.C. occasionally consults for Pressura Neuro, all funds to Monash University. M.F. is the CEO of the charitable organization Connectivity–Traumatic Brain Injury Australia.

Auteurs

Matthew K Bagg (MK)

Curtin Health Innovation Research Institute, Faculty of Health Sciences, Curtin University, Bentley, Western Australia, Australia.
Perron Institute for Neurological and Translational Science, Nedlands, Western Australia, Australia.
Centre for Pain IMPACT, Neuroscience Research Australia, Sydney, New South Wales, Australia.
School of Health Sciences, University of Notre Dame Australia, Fremantle, Western Australia, Australia.

Amelia J Hicks (AJ)

School of Psychological Sciences, Monash University, Melbourne, Victoria, Australia.
Monash-Epworth Rehabilitation Research Centre, Epworth Healthcare, Melbourne, Victoria, Australia.

Sarah C Hellewell (SC)

Curtin Health Innovation Research Institute, Faculty of Health Sciences, Curtin University, Bentley, Western Australia, Australia.
Perron Institute for Neurological and Translational Science, Nedlands, Western Australia, Australia.

Jennie L Ponsford (JL)

School of Psychological Sciences, Monash University, Melbourne, Victoria, Australia.
Monash-Epworth Rehabilitation Research Centre, Epworth Healthcare, Melbourne, Victoria, Australia.

Natasha A Lannin (NA)

Department of Neuroscience, Central Clinical School, Monash University, Melbourne, Victoria, Australia.
Alfred Health, Melbourne, Victoria, Australia.

Terence J O'Brien (TJ)

Department of Neuroscience, Central Clinical School, Monash University, Melbourne, Victoria, Australia.

Peter A Cameron (PA)

National Trauma Research Institute, Melbourne, Victoria, Australia.
School of Public Health and Preventive Medicine, Monash University, Melbourne, Victoria, Australia.
Emergency and Trauma Centre, The Alfred Hospital, Melbourne, Victoria, Australia.

D Jamie Cooper (DJ)

School of Public Health and Preventive Medicine, Monash University, Melbourne, Victoria, Australia.
Department of Intensive Care and Hyperbaric Medicine, The Alfred Hospital, Melbourne, Victoria, Australia.

Nick Rushworth (N)

Brain Injury Australia, Sydney, New South Wales, Australia.

Belinda J Gabbe (BJ)

School of Public Health and Preventive Medicine, Monash University, Melbourne, Victoria, Australia.
Health Data Research UK, Swansea University Medical School, Swansea University, Singleton Park, United Kingdom.

Melinda Fitzgerald (M)

Curtin Health Innovation Research Institute, Faculty of Health Sciences, Curtin University, Bentley, Western Australia, Australia.
Perron Institute for Neurological and Translational Science, Nedlands, Western Australia, Australia.

Classifications MeSH