Natural History Registry of Hypermobile Ehlers Danlos Syndrome and Hypermobility Spectrum

Project Description

The aim of this project is to create a specialized registry for people with either hypermobile Ehlers Danlos (hEDS) or Hypermobile Spectrum Disorder (HSD). The registry will gather information about symptoms, quality of life, and the journey to diagnosis. Researchers will use this data to learn more about how hEDS and HSD affect people over time, including how symptoms change and what factors influence the diseases. This will help researchers understand the differences in hEDS and HSD among people from different backgrounds and how these conditions progress.