Dear PURA community: I hope you are all healthy and this finds you well. I am sure that we are all standing resilient and vigilantly keeping our health and our loved ones safe in these uncertain and scary times.
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Recently we’ve been getting some questions about the status of the Registry.
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We want to update you as to our current progress.
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In late November we announced that the Registry was open and taking names and contact information for participating. At that time we were also starting our initial testing of the system to confirm everything was working, linking correctly, and the security was in place. To date, more than 35 families have contacted the Registry and submitted their contact information to be included with the Registry.
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While testing, several technical issues were identified that required correction before releasing the registry to all families.
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These issues have now been addressed and will be validated over the next several weeks.
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The next steps of the process then include:
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- Testing the specific changes
- Testing the system in total to confirm compatibility
- Agree the system is correct and complete
- Publish the study to the Production Database and generate a final state URL.
- Contact interested parents to start live data population.
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Upon publication of the final state URL, our Registry administrator will send out the link to each of the families who have contacted us so far. This will allow them to start the data input into the study.
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I know that this has been a longer time than anticipated. The work has been slower than we expected due to the technical nature of the development and the security requirements of the system. I remain excited and the coming prospects of the live data in the Registry. I am joyful thinking of the opportunity for the future research that will happen because of this registry.
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If you would like to be included in the Registry, please see our Registry page here. Any and all personal and health information sent here and included in the Registry remains confidential, even from the Foundation and will only be available to view by appropriate and vetted researchers. We will keep your e-mail address for updates per the study protocol and our Foundation Data Policy. The Registry will remain open to all families to join in the future as well.
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As always, I look forward to your questions: Please feel free to e-mail me directly at: ,d.spadafore@pura-syndrome.org or you can e-mail Jennifer Bierling, our Family Liaison at: ,,j.bierling@pura-syndrome.org.
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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