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:

 

Upcoming Registry Meet ups

Looking for support while completing the registry? Try one of our meet ups.

  • Thursday, February 2, 6:00 pm (ET) – United States Registry Meet Up
  • Thursday, February 23, 8:00 pm (Madrid Time) – Spain Registry Meet Up
  • Wednesday, March 22, 7:00 pm (UK Time) – United Kingdom Registry Meet Up
  • More dates coming soon!

If you would like to participate but are not sure what you need please contact Caroline at 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!

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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.

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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.

Patient Registry User Guide
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Registry Meet Ups

We have found that some people 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.

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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 2022 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 2022 conference, Dr Hunt and Prof Baralle will explain why the patient registry is important, how it operates and what it is expected to achieve in the long-term. Although still in its infancy, some early feedback will be provided from the data collected over the first few months of operation.

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