New NF1 Research Study: “Living with NF1” Survey

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New NF1 Research Study: “Living with NF1” Survey

Postby Julie-NF1researcher » Wed Jun 18, 2008 7:45 pm

** TAKE A SURVEY: www.NF1study.com **

Hello everyone,

My name is Julie and I am a researcher from the National Institutes of Health (NIH) and Johns Hopkins University. I am doing a new research study for adults with neurofibromatosis type 1 (NF1) that I would like to tell you about…

This research study is a survey. The goal of the study is to learn more about what people think and feel about living with NF1. I hope that the knowledge gained from this study will be used to improve healthcare and counseling for people with NF1.

IF YOU HAVE NF1 & ARE AT LEAST 18 YEARS OLD, YOU ARE INVITED TO TAKE THE SURVEY!!

You can take the survey online by going to this link: www.NF1study.com. The survey is anonymous. It will take about 30 minutes to do.

Feel free to contact me if you have questions or would like more information. You can reply to this post or send me a message. Or, you can email at cohenju@mail.nih.gov.

Thanks so much!!

Best,
Julie
Julie-NF1researcher
 
Posts: 8
Joined: Fri Jun 13, 2008 1:10 pm
Location: Bethesda, Maryland

Re: New NF1 Research Study: “Living with NF1” Survey

Postby Julie-NF1researcher » Wed Jul 02, 2008 5:57 pm

Hello everyone,

I just want to let you all know that the survey is still open and available for people to take! You can take the survey at: www.NF1study.com. Thank you so much to those of you who have already completed the survey - your participation is truly appreciated!

Let me know if you have any questions or would like more information. You can reply to this post, send me a message, or email me at cohenju@mail.nih.gov. Thanks again!!

Best,
Julie
Julie-NF1researcher
 
Posts: 8
Joined: Fri Jun 13, 2008 1:10 pm
Location: Bethesda, Maryland


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