Symptomatic Hypermobility Natural History Registry

This project is a hEDS/HSD registry to collect symptom data, quality of life concerns, and the history of seeking a diagnosis from individuals with a hypermobility-related disorder. This registry will be used to collect data on the disease progression, symptom variability, and other impacting factors the individuals experience with their disease over time. This information will be used to help researchers better understand the variability of symptoms amongst individuals with hypermobility from different demographics and better understand how the progression of symptoms occurs. This research also aims at gaining insight into what medications or treatments patients are using to manage their symptoms. We hope for this to lead the way to future research on symptom management strategies.