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Would you invest 15 minutes to help with Lyme?
We need useful data for the study of Lyme and how it affects patients?
We need your help! You CAN help by taking this survey!
This survey is sent by the National Capital Lyme and Tick-borne Disease Association to gather information for a new paper, ``The Human Dimension of Lyme Disease and Other Tick-Borne Diseases: A Patient's Perspective.'' The paper is for the Institute of Medicine's scientific workshop entitled, Lyme Disease and Other Tick-Borne Diseases: The State of the Science. The workshop is charged to represent the broad spectrum of scientific views on Lyme disease. It is expected to provide a forum for public participation and input from individuals with Lyme disease, as requested in congressional appropriations report language in House Committee Report 111-120 and Senate Committee Report 111-66.
Your participation is greatly valued and needed to add validity to the ``Human Dimensions'' paper. Earlier, we requested your personal story; now we are asking you to participate in this survey.
Your contribution to this database will add depth and validity to the descriptions that will be submitted on the patient experience in obtaining a diagnosis, seeking treatment, obtaining insurance coverage, and living with Lyme disease.
The survey is divided into 6 segments and consists of 4 types of questions: a ``matrix'' of opinion scaled questions, multiple choice questions where you select from a drop-down menu, multiple answer questions where you select all that apply, and an open ended question where you can describe your experience. The survey is anonymous.
The survey should take less than 15 minutes to complete. Due to a time limitation, we are asking that all surveys be returned by July 19th, 2010. If you have any problems or questions, please email Diane Wilcox at [email protected]. Your participation will make all the difference.
Click on the link below to take the survey. After you take the survey, please forward this message to other Lyme patients you know. If you are a medical professional, please consider sending this out to your patients.
Thank you Nat Cap Lyme for developing such and outstanding and thorough tool to gather input from people with Lyme disease!
Note: If you're the parent of a child with Lyme disease but not infected yourself, you can still do this survey because there are questions about the child.
It took me 30 minutes because i took advantage of every blank box to add additional notes about my personal hardships dealing with Lyme disease.
The form is VERY clear and easy, so never fear even if you've got neuroborreliosis.
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Thanks Smile for participating. The more people that participate the more details we can gather and say this information is based on blank amount of people who have participated.
Thanks again Hugs Linda
Posts: 107 | From Michigan | Registered: Nov 2004
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joalo
Frequent Contributor (1K+ posts)
Member # 12752
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Done.
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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payne
Frequent Contributor (1K+ posts)
Member # 26248
posted
can you update one for after 7/19/10 ?
-------------------- TULAREMIA/rabbit fever ? Posts: 1931 | From mid-michigan | Registered: Jun 2010
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To the best of my knowledge the Survey will end on 7/19/10. They will use that data along with the personal stories that were sent in to help write the paper for the IOM.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
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