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Starting the PURA Registry!

I thought I'd remind everyone, in case you missed it, the PURA Global Registry is now started!

This is a very exciting time for all of us, and I wanted to drop a quick note to clarify how you, as a parent, can interact with the registry.

First, from our website, you will find the Registry information on the RESEARCH tab from the home page.

You will need to send an e-mail to the Registry Study Team at: with some basic information.

Once received and reviewed by the Study Team, you will be contacted with log-in information for the start. As you go through the registry, you will be able to stop and save your information, and return later to complete. You will also be able to return with updated information in the future.

We are really looking forward to this process and once we have a critical amount of patient information we will be looking for additional studies.

Thanks again to everyone and your interest in this!



Dominic J. Spadafore, AIA


PURA Syndrome Foundation

The PURA Syndrome Foundation is a registered 501(c)(3) charity organization. Information on this website is not a substitute for personal medical advice. Families should consult a medically qualified physician in all matters relating to genetic diagnosis , management, and health . Information about PURA and genetics in general is a very fast moving area and while the information on this website is regarded as the best at the time of publication , some facts may change later .