Accredited Duchenne Care Centers Program
Achieving worldwide, uniform and up-to-date Duchenne care
Principal Author: Dr. Imelda de Groot
people living with Duchenne and Becker muscular dystrophy (DMD and BMD), receiving optimum care is of the utmost importance in order to guarantee the best symptomatic treatment.
The latest Standards of Care are available and should be implemented in all centers involved in care. As new treatment opportunities arise, staying up-to-date about the latest developments in DMD / BMD care is paramount. For the above reasons, the World Duchenne Organization has initiated the Accredited Duchenne Centers Program.
The aim of this program is to achieve worldwide, uniform and up-to-date care by 1) accrediting Duchenne centers that provide comprehensive care and adhere to the latest Standards of Care, and 2) supporting centers that do not yet meet these criteria with the aim of improving the standard of care provided to DMD patients. Education and training will be provided to all centers to keep them up-to-date, which is necessary in order to receive or renew the accreditation. The process of accreditation comprises of various questionnaires for professionals and patients (child and/or adult) which will be reviewed to see whether the minimum criteria are met. If so, a visit will be carried out using semi-structured interviews. If the outcome of the visit is that the minimum criteria are met, accreditation can be granted. The minimum criteria are based on the latest Standards of Care.
The program team is supported by a multidisciplinary and global Advisory Board, chaired by Nathalie Goemans. The intention is to start the accreditation process for the first centers in January 2023.
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