The Marfan Foundation is announcing 2020 in 2020 Backpack Health Campaign, a challenge to its community to hit the 2020 mark in the Marfan and Related Conditions International Patient Registry by June 2020. The registry, which was created by the Foundation and Backpack Health to better support research on Marfan, Vascular Ehlers-Danlos, Loeys Dietz, and other genetic aortic conditions, currently has 1188 participants. It is available in six languages, and people are welcome to join from all over the world.
“Medication and surgery have come a long way and have given people with Marfan and related conditions an opportunity to live a long lifespan, but many questions remain and more research is needed,” said David Liang, MD, Stanford University School of Medicine and Hoag Hospital, and the member of our Professional Advisory Board who helped to create the registry. “Having a confirmed registry of people with these conditions is a valuable, cost-effective way to facilitate research. Then we can encourage studies that look at quality of life issues such as pain, headaches, fatigue, pregnancy, and so many other topics.”
Designed specifically for our community of people with Marfan, Vascular Ehlers-Danlos (vEDS), Loeys Dietz, and other genetic aortic conditions, the registry is accessible via a smartphone app. Users simply download the app, create their “backpack” by indicating their diagnosis and uploading their medical records, and agree to join the registry. It’s also critical for participants to answer the surveys that are conducted through the registry. Only with your information, including your diagnosis, will researchers be able to address the questions and find answers to help the community live longer and better.
The Foundation’s goal is for 120 new people to join the registry each month, so the registry can hit 2020 by June 1, 2020.
Both the registry and the app are secure, and the information you provide is always de-identified and aggregated (combined with others) so that your health information remains private. The app offers the ability to share your information when you want to – for example, with a school nurse, new doctor, emergency room personnel, or relatives – through a tool called a “sharecard.” Those who use the app can create as many sharecards as they’d like and customize them, depending on with whom they want to share medical information.
In addition to the research benefits, Backpack Health is a useful tool for compiling and maintaining your family’s medical records, often a daunting task when several members of the family have a complex medical condition like Marfan or vEDS.
For more information, please visit our FAQs on the Marfan Blog.
The Marfan Foundation is a nonprofit organization that saves lives and improves the quality of life of individuals with genetic aortic and vascular conditions including Marfan, Loeys-Dietz, and Vascular Ehlers-Danlos syndromes. Our vision is a world in which everyone with genetic aortic and vascular conditions can live their best life.