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认可的杜兴氏肌营养不良症中心项目的开展,这是一个旨在为所有杜兴氏肌营养不良症患者提供统一和最新治疗的全球项目。

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.

作者信息

de Groot Imelda J M, Podolská Karolina, Goemans Nathalie, Bakker Suzie-Ann, Lalout Nawel, Jansen Merel, Vroom Elizabeth

机构信息

World Duchenne Organization, Landjuweel 34, 3905 PG, Veenendaal, The Netherlands.

Accredited Duchenne Centers Advisory Board, Veenendaal, The Netherlands.

出版信息

Orphanet J Rare Dis. 2025 Jul 2;20(1):335. doi: 10.1186/s13023-025-03843-9.

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.

摘要

认可型杜氏肌营养不良症中心(ADC)项目是由世界杜氏肌营养不良症组织(WDO)发起的一项全球项目。ADC项目的目标是为所有杜氏肌营养不良症(DMD)患者提供符合最新国际护理考量和护理指南的全球统一、与时俱进的护理。这将通过认可为儿童和/或成人提供符合最新护理考量的综合护理的杜氏肌营养不良症护理中心,并支持尚未达到这些认可标准的护理中心,以改善为DMD患者提供的护理来实现。认可过程包括从申请到通过持续教育维持认可的五个阶段。认可标准和程序是与一个国际咨询委员会密切合作制定的。本文描述了ADC项目的发展情况和内容。ADC项目是首个针对患有DMD的儿童和成人的全球认可项目。该项目的结果可能有助于最佳地实施最新研究成果,并为所有DMD患者及其家庭提供最佳护理。

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