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Latin American Cerebral Palsy Register (LATAM-CPR): study protocol to develop a collaborative register with surveillance of children with cerebral palsy in Latin American countries.

Authors :
Ruiz Brunner MLM
Jahan I
Cuestas E
Cieri ME
Escobar Zuluaga J
Condinanzi AL
Sanchez F
McIntyre S
Smithers-Sheedy H
Muhit M
Badawi N
Díaz R
Diaz A
Carranza J
Durán C
Quintero Valencia CA
Melaragno M
Khandaker G
Source :
BMJ open [BMJ Open] 2023 Dec 09; Vol. 13 (12), pp. e071315. Date of Electronic Publication: 2023 Dec 09.
Publication Year :
2023

Abstract

Introduction: Cerebral palsy (CP) is one of the leading causes of childhood disability globally with a high burden in low-income and middle-income countries (LMICs). Preliminary findings from the global LMIC CP Register (GLM CPR) suggest that the majority of CP in LMICs are due to potentially preventable causes. Such data are lacking in the Latin American region. Generating comparable epidemiological data on CP from this region could enable translational research and services towards early diagnosis and early intervention. We aim to establish a Latin American multicountry network and online data repository of CP called Latin American Cerebral Palsy Register (LATAM-CPR).<br />Methods and Analysis: The LATAM-CPR will be modelled after the GLM CPR and will support new and emerging Latin American CP registers following a harmonised protocol adapted from the GLM CPR and piloted in Argentina (ie, Argentine Register of Cerebral Palsy). Both population-based and institution-based surveillance mechanisms will be adopted for registration of children with CP aged less than 18 years to the participating CP registers. The data collection form of the LATAM-CPR will include risk factors, clinical profile, rehabilitation, socioeconomical status of children with CP. Descriptive data on the epidemiology of CP from each participating country will be reported, country-specific and regional data will be compared.<br />Ethics and Dissemination: Individual CP registers have applied ethics approval from respective national human research ethics committees (HREC) and/or institutional review boards prior to the establishment and inclusion into the LATAM-CPR. Ethical approval for LATAM-CPR has already been obtained from the HREC in the two countries that started (Argentina and Mexico). Findings will be disseminated and will be made publicly available through peer-reviewed publications, conference presentations and social media communications.<br />Competing Interests: Competing interests: None declared.<br /> (© Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Details

Language :
English
ISSN :
2044-6055
Volume :
13
Issue :
12
Database :
MEDLINE
Journal :
BMJ open
Publication Type :
Academic Journal
Accession number :
38070889
Full Text :
https://doi.org/10.1136/bmjopen-2022-071315