Connective Issues Winter 2019

reSeArCH & progreSS

CHARTING NEW WATERS AND HELPING OTHERS Maryland mom puts her health information to good use for future generations

BACKPACK HEALTH AND THE MARFAN FOUNDATION FIRST SURVEY LAUNCHED The Foundation is driving the collection of useful information and statistics in the Marfan Syndrome and related disorders registry through surveys that are distributed through the backpack Health app. The first survey was launched at the end of 2018. it asks about diagnosis and features, as well as genetic testing results. it takes only five to ten minutes to complete. Like all information in backpack Health, it is private and secure. Those who subscribe to backpack Health, can access the survey through their personal backpack. Those who want to participate in research surveys can simply subscribe to backpack Health (it’s free!), access and complete the survey, and then securely upload their medical information. FIND OUT MORE For more information on the Marfan Syndrome and related disorders international patient registry, please visit or .

At the Foundation’s 2017 annual conference, Stacy paulsen, 58, of ocean pines, Md, was introduced to backpack Health, an app that offers people with Marfan and related conditions—and their families—an easy and secure way to manage their healthcare records. The app was designed specifically for those living with complex, rare, and chronic conditions. Stacy found a lot of practical benefit from backpack Health for herself and her family. but keeping track of medical records is only one advantage of the app. Stacy is also excited about the Marfan and related disorders international patient registry, which The Marfan Foundation created through backpack Health. This gives her a way to poten- tially impact future treatments of Marfan and help others who will be navigating the challenges of Marfan syndrome in years to come. Hopefully, by uploading my medical information into the registry, it will be useful to researchers in the future. “As an older ‘Marf,’ i may be charting new waters, such as, is my arthritis normal for aging or is it worse because of my height? what’s going to happen next with my eyes and the surgeries i’ve had as time progresses? Hopefully, by uploading my medical information into the registry, it will be useful to researchers in the future.”


Getting Started After setting up her account, Stacy started the process of entering impor- tant diagnostic, treatment, and testing results into the app for herself and her daughter, who also has Marfan syndrome. She’s been adding more information with each new doctor visit and procedure so it is handy for her future needs. in addition, because she consented, all of this medical information is then de-identified so it can’t be traced back to her and aggregated (combined) with information provided by others and added to the registry. The process is safe and secure—no personal identifying information is shared. Stacy paulsen knows first-hand that it is a relief to get a handle on her family’s stacks of medical information. but it feels even better when it means helping others on the same path along the way.


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