LymeDisease.org is launching this survey to establish research priorities for the Lyme disease community. The results of this survey will be used to develop a research agenda which will be publicized and used as a tool to give the patient voice in the funding of research. The ultimate goal is to ensure funding for research that matters to patients.
This survey follows a strategic conference that was held in November of last year at the American Association for the Advancement of Science in Washington D.C. Fifty people with an expertise in Lyme disease participated in the conference, including 23 patients, 17 researchers and 10 clinicians. A series of short presentations sparked debate and dialogue among those attending and ultimately resulted in a list of research priorities that were voted on by participants.
We then provided those questions to patients enrolled in MyLymeData, our big data project that allows patients to pool their data to help find a cure for Lyme disease. Over 1,000 patients ranked the importance of these questions and suggested new questions that were not on the list.
We are now asking you to help prioritize them.
This will help us understand which questions are most important to patients, caregivers and families, researchers, and healthcare professionals for future research.
Please take part if you are:
*A person with Lyme disease
*A caregiver/relative or bereaved caregiver/relative of someone with Lyme disease
*A healthcare professional working with people with Lyme disease
*An organization representing the interests of people with Lyme disease
*A researcher conducting research about Lyme disease
This survey has three parts. First, you will be asked to select from a long list of questions those you feel are important. Second, you will be asked to select the ten most important questions to you from those questions. Third, you will be asked to rank your top ten in order of importance to you.
The survey should take 5 to 10 minutes to complete.
If you have any questions, please contact mpotter@lymedisease.org. For more information on LymeDisease.org, go to www.lymedisease.org.
Thank you for participating!