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:

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Parents - We need your help!
The more of us that take the time to fill out the PURA Global Patient Registry, the more tools we will give our researchers to understand and help our PURA loved ones. 

Please take a moment to start the process by contacting the study team at PURA@soton.ac.uk with your contact email and the PURA study participants name, date of birth (DD/MM/YYYY), and country of residence.

Once you have begun the process, we have found that some prefer to complete the registry along with members of our PURA community. If this interests you, please write an email with the subject “registry together” to: families@pura-syndrome.org. We will put you on our list and prepare the events to do this.

If you need help with translations write to families@pura-syndrome.org specifying the language you need your translation done into.

Once you have obtained a login to begin the Registry, use this Patient Registry User Guide to help you navigate through the process.