PURA Syndrome Foundation Global Patient Registry

PURA Syndrome Longitudal Natural History Study

Working in collaboration with families, clinicians and researchers, this project proposes to collect clinical data on PURA syndrome, from affected patients globally throughout the course of their lives. This should enable researchers to define the full spectrum of the disorder, and also characterise the natural history (what happens across age and life) for PURA syndrome.

For information regarding this study, please click on the following links, download, and review the following documents:

PURA Registry 4.png

If you have an interest in participating in this study please contact the study team at PURA@soton.ac.uk with your contact email and the

PURA study participants name, date of birth (DD/MM/YY), and country of residence.