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: