The Ehlers-Danlos Society's Registry & Research Program Manager, Amelia, is at @REDCapCon 2024 this week, the annual REDCap conference hosted by Johns Hopkins! REDCap is the secure system that hosts our DICE EDS and HSD Global Registry and Repository, an important tool in collaborative research that allows #EhlersDanlosSyndrome and #HypermobilitySpectrumDisorder community members to complete surveys and share medical information to assist with research. The Registry also helps researchers to advance understanding of these conditions through use of the data and by sharing new surveys for #Registry members to participate in. The Ehlers-Danlos Society is a partner in the #REDCap consortium which is made up of over 7,000 partners in 159 countries. This year, REDCap is celebrating 20 years of operation, and the conference is showcasing how its members (like us) are empowered by the software. People are attending from all around the world! #Rarediseases are in the spotlight at the conference, with the keynote speakers discussing work at Johns Hopkins in pediatric rare diseases. Amelia was selected to present a poster about our registry, raising awareness about how it is accelerating research in #EDS and #HSD! Special thanks to everyone who has joined the registry, and if you are not a member, you can join easily today and be a part of this incredible progress! Visit ehlers-danlos.com/eds-global… today. #REDCapCon2024

Congrats to Ashleigh and Dan! MVPs! #redcapcon

Super excited for another #REDCapCon!

Nos complace invitarlos al REDCap Con Hispano Virtual 2024,que se llevará a cabo del 5 al 26 de junio de 2024. La inscripción para el REDCapCon Hispano Virtual 2024 es gratuita. Regístrate en: redcapconhispano.com

It’s on my mind because next year’s REDCapCon is in Florida. And I have colleagues who might not attend for that reason

Real people, Real superpowers! #redcapcon

#REDCapCon is underway in Seattle!! We at ITHS are thrilled to host the hundreds of visitors from across country, some who have been attending this popular conference for many years. No matter if this is your 1st or 10th conference- it's an honor to have you in the Emerald City!

Unfortunately the Mariners came up short, but a good time was had by all! #redcapcon

Congratulations to @NACCData's Senior @ProjectREDCap Administrator for her recognition as an outstanding leader at this year's #redcapcon! We are thankful for all of Laura's hard work and the expertise she brings to our team everyday!

With Option 1, if I understand correctly, any functionality wholly contained within REDCap can be considered validated regardless of where REDCap is installed, but you still validate anything like email-based functionality and authentication that are site specific. #redcapcon

Two billion people have received the COVID vaccine for which we used REDCap to manage data. REDCap is very likely the right choice for you. #redcapcon

One in 2000 black NCAA basketball players suffered sudden cardiac arrest between 2014 and 2018. NOT RARE. ECGs greatly increase chances of preventing SCA. #redcapcon

I’m so glad for Chris and Theresa! MVPs! #redcapcon

REDCap is global. #redcapcon

Congrats to Chris and Theresa! #redcapmvps #redcapcon

It's starting! #redcapcon

Good afternoon, Seattle! Great view from Kerry Park. #redcapcon

These donuts are so incredible! They kinda blew my mind. Never had anything like them. #redcapcon