Frequently Asked Questions

An overview of the Frequently Asked Questions (FAQs) about the process of the Accredited Duchenne Centers Program, and benefits of becoming accredited.

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Processes and Procedures

Your center can start the accreditation process by filling out the registration form on the Applications page. After registration, your center will receive a link to a digital questionnaire to determine whether your center meets the criteria for visitation. A visitation will be scheduled if your center appears to provide care adhering to the latest DMD care considerations and/or consensus guidelines, and can provide a letter of support from a national Duchenne patient organization.
There are no costs associated with applying for accreditation for your center. The ADC program is initiated and financed by the World Duchenne Organization (WDO). The ADC Program Team will ask for some free time from your team members for the semi-structured interviews (approximately 30-45 minutes per person).
The length of the accreditation procedure is dependent on multiple factors. Below we describe the various steps:

Step 1
Within a few days after registration, your center will receive a link to a digital questionnaire. We will contact you soon after we have reviewed the results of the questionnaire.

Step 2
If your center appears to be providing most care according to the latest DMD care considerations and/or consensus guidelines, we will contact you to schedule a visitation with a group of experienced professionals and a patient representative. During the visitation we will conduct semi-structured interviews with clinicians, allied health therapists, and patients/families. This will take one to two days for the ADC Program Team (approximately 30-45 minutes per person for your team members), since we aim to speak to each professional personally.

Step 3
The ADC Program Team will summarize and review the semi-structured interviews and will provide written feedback. If there are any doubts, the ADC Advisory Board will be asked for feedback. Your center will receive a review report within two months of the visitation. Centers will be asked for clarification if  needed (written or via an online meeting).

Step 4
If your center meets the criteria, your center can become an Accredited Duchenne Center. Centers that do not yet meet all criteria for accreditation will be advised to make some minor changes in health care and can subsequently become an Accredited Duchenne Center.
Please contact the ADC Program Team if you have any complaints or questions about criteria for accreditation. Accreditation criteria are based on the latest care considerations, consensus guidelines and/or expert opinions.
ADC questionnaires and semi-structured interviews will be in English. Questionnaires for DMD patients and families will be provided in your native language. Someone from the national Duchenne patient organization with good command of both your native language and English language is needed for the semi-structured interviews with patients and their families. 
We would like to ask you to contact the ADC Program Team if there are any significant changes such as changes in your job title or composition of your multidisciplinary team.
Centers providing most (but not yet all) care according to the latest care considerations and/or consensus guidelines will receive advice to optimize care. If minor changes in health care are made, centers can subsequently become an Accredited Duchenne Center. If a center receives a ‘major revision’ decision, a center will not become an Accredited Duchenne Center in the short term. Centers receiving a ‘major revision’ decision will receive advice to improve care. Centers may re-apply for accreditation after making significant changes in health care.
Accredited Duchenne Centers will maintain their accreditation for five years (unless major changes in health care organization and/or the care provided are made). After five years, an online re-accreditation procedure will be scheduled. If needed, there will be another visitation.

General Accreditation

Accredited Duchenne Centers will be announced on the ADC website. Currently, no centers are accredited yet as we have just launched the program.
Accredited Duchenne Centers will be announced on the (international) ADC website. Furthermore, you can announce your accreditation on the website of your center and social media. Your national Duchenne patient organization may also promote your accreditation on their website and/or social media. Accredited Duchenne Centers will receive a banner.
Whether accreditation will cover the whole hospital, or just a center within the hospital, will depend on the organization of health care at the applying center.

Scope of Accreditation

The number of patients treated should be in relation to the care region for accreditation. The exact number may differ per region and/or country.
The ADC Program handles criteria for accreditation that are based on the latest care considerations, consensus guidelines and/or expert opinions. Screening criteria are published on the ADC website. Criteria have been developed together with the ADC Advisory Board.
Multidisciplinary care for DMD patients may be provided by one center, or can be shared with other locations. The coordinating center is the applying center.
Yes. Centers can apply for accreditation for pediatric and/or adult DMD care. Criteria for accreditation differs for children and adults and, therefore, centers apply separately for pediatric and adult accreditation.

Benefits of Accreditation

Accreditation ensures that the Center meets or exceeds the care considerations for patients with Duchenne muscular dystrophy (DMD). This includes a multidisciplinary team approach to care that addresses all aspects of the patient's needs.
Accreditation demonstrates to patients and families that the Center is committed to providing the best possible care for individuals with DMD. 
Accredited Centers are part of a network of professionals who specialize in DMD care, which can lead to collaboration and sharing of best practices. This can result in better outcomes for patients and more efficient use of resources. Accredited centers will be part of a global network of Accredited Centers.
Accreditation can help Centers access funding opportunities. This can help advance the field of DMD research and improve patient care.
Accreditation can improve the Center's reputation and recognition in the community and among medical professionals. This can attract new patients and help retain existing ones.
Ongoing education will be provided to Accredited Duchenne Centers to keep care in line with the latest care considerations and consensus guidelines (provided by the World Duchenne Organization).

Do you have another question? Please feel free to contact the ADC Team.