I thought I’d remind everyone, in case you missed it, the PURA Global Registry is now started!
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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.
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First, from our website, you will find the Registry information on the, RESEARCH tab from the home page.
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You will need to send an e-mail to the Registry Study Team at: ,PURA@soton.ac.uk with some basic information.
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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.
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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.
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Thanks again to everyone and your interest in this!
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Cheers!
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Dominic J. Spadafore, AIA
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President
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PURA Syndrome Foundation
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d.spadafore@pura-syndrome.org
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