Dear PURA Families:
We are very proud to be launching the PURA syndrome Global Patient Registry! This registry has been in the works for a couple of years, and is meant to be a repository of patient information that can be used for future studies. It is only through your support and help that we have gotten this far. It has taken countless hours of work and coordination by a great number of people from several countries to fulfill this dream. I believe this was one of the first goals when the Foundation was founded. And it has been a consistent desire we hear from you, our parents.
As our families start accessing the registry, the information you input will be able to be confirmed by their medical staff. It will be anonymized to protect each patient and their families. The registry is able to be cross referenced with a future biobank to further enhance research and testing. We have developed modules intended to cover as many areas as reasonably possible. The system is set up so that you can come, enter some information, save, and come back to add. You will be able to add further information as your families grow and develop as well.
The PURA Syndrome Foundation has worked on the registry with the University of Southampton and the Clinical Informatics Research Unit (CIRU) with the ALEA System. As part of a multi-step development and roll out, we are launching the Registry and all of the various forms and different modules at the same time. To participate in the registry study please see our PURAregistry web page and e-mail the Study Team at: PURA@soton.ac.uk
We are first launching in a single language as part of the process. This allows us to prove out the different steps, modules, and areas of information. The reason for a single language at the launch is two fold:
First, all of the program is in a single language and when errors are found, it is much easier to fix in one language rather than multiple languages.
And Second, in order to launch in multiple languages, we were looking at an additional 6-8 months to translate into 7 languages simultaneously. As a foundation, we felt it important to get the registry launched and tested expeditiously, and add languages as soon as we have all of "the kinks worked out".
A few questions you may have, I hope to address:
Because about 70% of our families are native English speakers, we felt it was a good place to start with the most common spoken language.
When do the Translations come out?
We are expecting to prove out the programming within the next few months. The more families participate, the quicker we will be able to work out the system. We will be fully translating into multiple other languages as soon as the testing is complete and currently we have budgeted for 7 additional languages. Ultimately we will be working toward having it translated into all of the native languages our families speak. The translations will be developed by professionals and vetted by native speakers in each respective language. The languages will be added in order of the greatest native speaking families known to the foundation.
Do I have to wait for a translation?
No, if you are not a native English speaker, you do not have to wait to start. Once the translations are available, we are expecting that you will be able to review what you've already entered.
We are very excited about our progress and we want to say thank you to everyone who has helped us get here. It is your support that makes all of this possible, and your continuing support will help guide our work into helping provide the answers, connect, and inspire the Global PURA Community!
Thanks for reading through this, I know it's a much longer post that I usually write.
So, now it's your turn! Please drop us a note with your questions or concerns!
Again, we are so very grateful for your help!
Dominic J. Spadafore, AIA
PURA Syndrome Foundation