The Marfan Foundation and Backpack Health Have Teamed up to Create a New Patient Registry

According to a story from PR Newswire, The Marfan Foundation and Backpack Health are partnering so that the foundation can begin the creation of a patient registry for people affected by the disease. Patient registries are exceptionally valuable for researchers; they allow them to perform in-depth analysis in order to identify significant trends across the patient community.
Marfan syndrome is genetic disorder that affects the body’s connective tissue. The extent to which a patient is affected can vary, but people with Marfan syndrome tend to be exceptionally tall and thin, with long limbs and digits. They also tend to have very flexible joints. People with Marfan syndrome are also at a greater risk of scoliosis, heart and other cardiovascular problems, and some other physical abnormalities. Despite potential health risks, the life expectancy of people with Marfan syndrome is generally normal. Risks of complications such as dilated aorta have caused syndrome specialists to recommend that patients limit their physical activity, and some high intensity exercises can pose a risk of potentially lethal events, such as aortic dissection. To learn more about Marfan syndrome, click here.
The president of the Marfan foundation, Michael Weamer, says that the registry will allow patients to feel more empowered as they will be able to become much more directly involved in research. This is essential to the mission of the organization. The registry is expected to be international in scope and is slated to launch next month. The partners hope that they will be able to register 6,000 patients over the course of three years, and expect it to continue to grow from there.

An incentive for joining is that patients will gain access to Backpack Health’s subscription service that will allow them to manage their health records. This service will allowed patients to navigate and interpret their records more easily, as well as access them more efficiently.

Overall, the establishment of a patient registry is an essential step for the Marfan syndrome patient community. Once it is up and running, researchers will have a valuable resource that will allow them to engage more directly with patients when conducting studies and will streamline and simplify the data gathering process.

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