| rowley |
| Site Admin |
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| Joined: 26 Apr 2006 |
| Posts: 260 |
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National Marfan Foundation
National Marfan Foundation Research Survey
We would like to invite you to participate in an online survey for people diagnosed with Marfan syndrome/parents of children diagnosed with Marfan syndrome created by Traitwise, an online health survey company, in collaboration with three doctors on the NMF's Professional Advisory Board. The survey asks questions about symptoms, treatments, quality of life and more.
This survey is unique in two important ways:
1. All data from the survey will be shared freely with researchers nationally and internationally
2. Sophisticated algorithms look for previously unsuspected patterns that may lead to new diagnostics and treatments.
The goal is to find patterns that can personalize and improve the treatment people receive.
To view the survey/complete the survey go to: http://www.marfan-survey.org
You'll be asked to create a user name and password, which will be emailed to you. Then you'll be off and running. You may complete as much or as little as you like and you can complete the survey in multiple sessions. The system will remember where you left off. Total, the survey takes about 20-30 minutes. Any answers you give will of course be completely anonymous and not sold or traded to any outside entity.
Please send the survey link above to others you know in the Marfan community. The more responses the better the data we will have.
Thank you. |
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