Introducing a core dataset for real-world data in multiple sclerosis registries and cohorts: Recommendations from a global task force.
Mult Scler
; 30(3): 396-418, 2024 Mar.
Article
em En
| MEDLINE
| ID: mdl-38140852
ABSTRACT
BACKGROUND:
As of September 2022, there was no globally recommended set of core data elements for use in multiple sclerosis (MS) healthcare and research. As a result, data harmonisation across observational data sources and scientific collaboration is limited.OBJECTIVES:
To define and agree upon a core dataset for real-world data (RWD) in MS from observational registries and cohorts.METHODS:
A three-phase process approach was conducted combining a landscaping exercise with dedicated discussions within a global multi-stakeholder task force consisting of 20 experts in the field of MS and its RWD to define the Core Dataset.RESULTS:
A core dataset for MS consisting of 44 variables in eight categories was translated into a data dictionary that has been published and disseminated for emerging and existing registries and cohorts to use. Categories include variables on demographics and comorbidities (patient-specific data), disease history, disease status, relapses, magnetic resonance imaging (MRI) and treatment data (disease-specific data).CONCLUSION:
The MS Data Alliance Core Dataset guides emerging registries in their dataset definitions and speeds up and supports harmonisation across registries and initiatives. The straight-forward, time-efficient process using a dedicated global multi-stakeholder task force has proven to be effective to define a concise core dataset.Palavras-chave
Texto completo:
1
Bases de dados:
MEDLINE
Assunto principal:
Esclerose Múltipla
Limite:
Humans
Idioma:
En
Revista:
Mult Scler
Assunto da revista:
NEUROLOGIA
Ano de publicação:
2024
Tipo de documento:
Article
País de afiliação:
Bélgica