About Accredited Duchenne Centers

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Introduction

What is the ADC Program?

The Accredited Duchenne Centers (ADC) Program is a worldwide program initiated by the World Duchenne Organization. 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). This includes the current Standards of Care and Adult DMD Care.

This will be realized by:

1. Accrediting Duchenne Centers for children and adults that provide comprehensive care and adhere to the latest care considerations and consensus guidelines, and
2. Supporting centers that nearly meet these criteria to improve care provided to DMD patients.

Accredited Duchenne Centers for Children and/or Adults provide care according to criteria that are in agreement with the latest care considerations, consensus guidelines, and/or expert opinions. Care is provided by a multidisciplinary team and may be delivered either by one center, or shared with other locations; however the applying center is responsible for the care plan, coordination, communication, documentation and collaboration.

Duchenne Centers for Children and/or Adults that provide most care according to the care considerations, consensus guidelines and/or expert opinions (but do not meet all criteria yet) will receive advice to optimize care. Currently, these are the three Lancet articles and the Consensus Guideline for Adult Duchenne Care.

The development of Accredited Duchenne Program is further described in an open access article published in Orphanet Journal of Rare Diseases, available here.

Why this program?

There is a compelling need to ensure that wherever they are in the world, everyone diagnosed with Duchenne (and Becker) Muscular Dystrophy can benefit from a standard of care that is informed by the best practice of the best clinicians from all over the world. It is equally important that the information available to parents is contemporary, truthful and is based upon the latest research.

Latest Standards of Care

Ever since the initial Care Considerations for Duchenne muscular dystrophy (DMD) were published in 2010, clinical care of this rare disease has evolved. In 2018, an updated version of the 2010 Care Considerations was published.

The new considerations, also called the latest Standards of Care, aim to address the needs of people living with Duchenne, give guidance on assessment and treatment options, and consider the implications of genetic and molecular therapies for DMD.

Publications in Lancet Neurology:

1. Diagnosis, and neuromuscular, rehabilitation, endocrine, gastrointestinal and nutritional management.
2. Respiratory, cardiac, bone health, and orthopedic management in Duchenne muscular dystrophy.
3. Primary care, emergency management, psychosocial care, and transitions of care across the lifespan.

Experience of Accredited Centers

“I understand that this accreditation is a privilege, but it is also a great responsibility to be able to have the standard of care that DMD patients require, and I hope that as the multidisciplinary team of the Institute we can carry it out to benefit the DMD patients”.

“We are very impressed by the professional assessment and engagement presented by the ADC Team to ensure that adequate quality of care is maintained in our center. On the other hand, it was a pleasure to discuss ideas on how we can do better for our DMD community.”

“The ADC status gave us satisfaction and strength for further improvements to maintain the DMD care at the highest level. So our DMD boys will have the same possibilities as their peers abroad.”

“In our region we have so many children and adults with DMD seeking multidisciplinary care. Getting accredited by WDO will help us set standards for care in our context.”

“The intensive interviews led by the committee, the questions asked and the vision with which the approach was made, were extremely appreciated by our specialists.”

“Your insights have been invaluable in helping us identify ways to enhance patient care.”

Adult DMD Care

With providing optimal care, life expectancy of people living with Duchenne Muscular Dystrophy have improved significantly, with more Duchenne patients becoming adults. Adult life with Duchenne comes with new opportunities as well as new medical issues, which have not been addressed in the current Standards of Care.

Through a series of workshops with specialists from a wide range of clinical areas, the Consensus Guideline for Adult Duchenne Care were published in the Journal of Neuromuscular Diseases.

The documents aim to provide a framework to improve clinical services and multi-disciplinary care for adults living with Duchenne Muscular Dystrophy.