Duchenne muscular dystrophy (DMD) is an X-linked genetic disease, caused by the 
absence of the dystrophin protein. Although many novel therapies are under 
development for DMD, there is currently no cure and affected individuals are 
often confined to a wheelchair by their teens and die in their 
twenties/thirties. DMD is a rare disease (prevalence <5/10,000). Even the 
largest countries do not have enough affected patients to rigorously assess 
novel therapies, unravel genetic complexities, and determine patient outcomes. 
TREAT-NMD is a worldwide network for neuromuscular diseases that provides an 
infrastructure to support the delivery of promising new therapies for patients. 
The harmonized implementation of national and ultimately global patient 
registries has been central to the success of TREAT-NMD. For the DMD registries 
within TREAT-NMD, individual countries have chosen to collect patient 
information in the form of standardized patient registries to increase the 
overall patient population on which clinical outcomes and new technologies can 
be assessed. The registries comprise more than 13,500 patients from 31 different 
countries. Here, we describe how the TREAT-NMD national patient registries for 
DMD were established. We look at their continued growth and assess how 
successful they have been at fostering collaboration between academia, patient 
organizations, and industry.