If you ever asked yourself this, the map we have created will come in handy. We coloured in orange those countries in which at least one person with DRPLA has been identified – 35 countries in total!
We have gathered this information from scientific articles and personal communications with neurologists and other healthcare professionals. This is a work in progress and by no means a complete picture! There are more individuals with DRPLA that we have not been found yet and more that might be undiagnosed.
This information takes us one step closer to finding how many people with DRPLA there are worldwide. But it has some limitations. Researchers and pharmaceutical companies need to know where individuals with DRPLA are located. However, it is also important to know how many there are in each region, their age, which symptoms they present with, what their trajectory has been like, etc. The key information needed by the research community is collected through the CureDRPLA Global Patient Registry and we strongly encourage all individuals with DRPLA to join. Visit the registry website for more information.
List of countries coloured in the map: Armenia, Australia, Austria, Bangladesh, Belgium, Brazil, Canada, China, Denmark, France, Germany, Hungary, India, Iran, Israel, Italy, Japan, Malta, Mexico, Netherlands, New Zealand, Niger, Paraguay, Portugal, Russia, Singapore, South Korea, Spain, Sri Lanka, Thailand, Tunisia, Turkey, United Kingdom, United States of America, Venezuela.
In the USA, individuals with DRPLA have been identified in the following states: California, Colorado, Florida, Georgia, Hawaii, Illinois, Indiana, New York, North Carolina, Pennsylvania, Tennessee, Texas, Utah, Washington, Wisconsin. In Canada, they have been identified in Ontario and Quebec.