Development of the accredited duchenne centers program, a global program to achieve uniform and up-to-date care for all people living with duchenne muscular dystrophy

Abstract The Accredited Duchenne Centers (ADC) Program is a global program initiated by the World Duchenne Organization (WDO). The aim of the ADC Program is to achieve global, uniform and up-to-date care for all people living with Duchenne Muscular Dystrophy (DMD) that are in line with the latest in...

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Main Authors: Imelda J. M. de Groot, Karolina Podolská, Nathalie Goemans, Suzie-Ann Bakker, Nawel Lalout, Merel Jansen, Elizabeth Vroom
Format: Article
Language:English
Published: BMC 2025-07-01
Series:Orphanet Journal of Rare Diseases
Subjects:
Online Access:https://doi.org/10.1186/s13023-025-03843-9
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author Imelda J. M. de Groot
Karolina Podolská
Nathalie Goemans
Suzie-Ann Bakker
Nawel Lalout
Merel Jansen
Elizabeth Vroom
author_facet Imelda J. M. de Groot
Karolina Podolská
Nathalie Goemans
Suzie-Ann Bakker
Nawel Lalout
Merel Jansen
Elizabeth Vroom
author_sort Imelda J. M. de Groot
collection DOAJ
description Abstract The Accredited Duchenne Centers (ADC) Program is a global program initiated by the World Duchenne Organization (WDO). The aim of the ADC Program is to achieve global, uniform and up-to-date care for all people living with Duchenne Muscular Dystrophy (DMD) that are in line with the latest international care considerations and care guidelines. This will be realized by accrediting Duchenne care centers for children and/or adults that provide comprehensive care according to the latest care considerations, and supporting care centers that do not yet meet these criteria for accreditation, to improve care provided to DMD patients. The accreditation process consists of five stages ranging from application to maintenance of accreditation by continuous education. The accreditation criteria and procedures were developed in close collaboration with an international Advisory Board. This paper describes the development and content of the ADC Program. The ADC Program is the first global accreditation program for both children and adults with DMD. The results of the program may contribute to optimal implementation of the latest research insights and optimum care for all people living with DMD and their families.
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institution Kabale University
issn 1750-1172
language English
publishDate 2025-07-01
publisher BMC
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series Orphanet Journal of Rare Diseases
spelling doaj-art-fe5c006da9f64cd5b131084abac418b32025-08-20T03:45:32ZengBMCOrphanet Journal of Rare Diseases1750-11722025-07-0120111410.1186/s13023-025-03843-9Development of the accredited duchenne centers program, a global program to achieve uniform and up-to-date care for all people living with duchenne muscular dystrophyImelda J. M. de Groot0Karolina Podolská1Nathalie Goemans2Suzie-Ann Bakker3Nawel Lalout4Merel Jansen5Elizabeth Vroom6World Duchenne OrganizationWorld Duchenne OrganizationAccredited Duchenne Centers Advisory BoardWorld Duchenne OrganizationDuchenne Parent ProjectWorld Duchenne OrganizationWorld Duchenne OrganizationAbstract The Accredited Duchenne Centers (ADC) Program is a global program initiated by the World Duchenne Organization (WDO). The aim of the ADC Program is to achieve global, uniform and up-to-date care for all people living with Duchenne Muscular Dystrophy (DMD) that are in line with the latest international care considerations and care guidelines. This will be realized by accrediting Duchenne care centers for children and/or adults that provide comprehensive care according to the latest care considerations, and supporting care centers that do not yet meet these criteria for accreditation, to improve care provided to DMD patients. The accreditation process consists of five stages ranging from application to maintenance of accreditation by continuous education. The accreditation criteria and procedures were developed in close collaboration with an international Advisory Board. This paper describes the development and content of the ADC Program. The ADC Program is the first global accreditation program for both children and adults with DMD. The results of the program may contribute to optimal implementation of the latest research insights and optimum care for all people living with DMD and their families.https://doi.org/10.1186/s13023-025-03843-9Accredited duchenne centers (ADC) programDuchenne muscular dystrophyCertificationGlobalCare considerationsConsensus guidelines
spellingShingle Imelda J. M. de Groot
Karolina Podolská
Nathalie Goemans
Suzie-Ann Bakker
Nawel Lalout
Merel Jansen
Elizabeth Vroom
Development of the accredited duchenne centers program, a global program to achieve uniform and up-to-date care for all people living with duchenne muscular dystrophy
Orphanet Journal of Rare Diseases
Accredited duchenne centers (ADC) program
Duchenne muscular dystrophy
Certification
Global
Care considerations
Consensus guidelines
title Development of the accredited duchenne centers program, a global program to achieve uniform and up-to-date care for all people living with duchenne muscular dystrophy
title_full Development of the accredited duchenne centers program, a global program to achieve uniform and up-to-date care for all people living with duchenne muscular dystrophy
title_fullStr Development of the accredited duchenne centers program, a global program to achieve uniform and up-to-date care for all people living with duchenne muscular dystrophy
title_full_unstemmed Development of the accredited duchenne centers program, a global program to achieve uniform and up-to-date care for all people living with duchenne muscular dystrophy
title_short Development of the accredited duchenne centers program, a global program to achieve uniform and up-to-date care for all people living with duchenne muscular dystrophy
title_sort development of the accredited duchenne centers program a global program to achieve uniform and up to date care for all people living with duchenne muscular dystrophy
topic Accredited duchenne centers (ADC) program
Duchenne muscular dystrophy
Certification
Global
Care considerations
Consensus guidelines
url https://doi.org/10.1186/s13023-025-03843-9
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