Global Patient Registry
PURA Syndrome Longitudal Natural History Study
About the PURA Syndrome
Global Patient Registry
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:
New: Schedule your 1-on-1 meeting today!
Looking for support while completing the registry? Try scheduling a 1-on-1 meeting with one of our research nurses by clicking their calendar links below:
***Please note: Prior to scheduling an appointment, you must create an account as indicated below under “Start the Process.” Once you have received your login information, you may set up an appointment and gather the necessary information on the checklist below.
If you would like to participate but are not sure what you need please contact: families@pura-syndrome.org
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.
Get started today!
Start the Process
Contact the study team at PURA@soton.ac.uk with the following information:
- your contact email
- the PURA study participants name
- the PURA study participants date of birth (DD/MM/YYYY)
- the PURA study participants country of residence
Please allow up to two business days for a response and please keep an eye on your junk mail in case the response does not make it to your inbox.
Navigating the Registry
Once you have obtained a login to begin the Registry, use the Patient Registry User Guide below to help you navigate through the process.
Need help? Schedule a 1-on-1 meeting today!
We have a Research Nurse and a PURA Aunt (who is also a Nurse) that can aid in walking you through the Registry process. Please click on one of the links below to schedule a 1-on-1 appointment with them to help you. Please note: Prior to scheduling an appointment, you must create an account as indicated above under “Start the Process.” Once you have received your login information, you may set up an appointment.
Be prepared before your meeting!
Below is a document containing a checklist of items that would be useful to have at the appointment to be as efficient as possible. More than one session will likely be required to complete the full registry, however they will guide you on some of the more higher priorty forms that need to be filled out first.
Translations
If you need help with translations write to families@pura-syndrome.org specifying the language you need your translation done into.
Watch this video from our 2023 Conference: Feedback from the PURA Syndrome Global Patient Registry
The PURA syndrome global patient registry was formally launched in January 2022. In this video from our 2023 conference, Dr Hunt explains why the patient registry is important, how it operates and what it is expected to achieve in the long-term.