This survey is being conducted by LymeDisease.org to determine the views of Lyme patients regarding blood tests used to diagnose Lyme disease. The Food and Drug Administration (FDA) has proposed regulating Lyme diagnostic tests. Many tests for Lyme disease used by physicians to diagnose patients are not regulated by the FDA. Instead, they are regulated through the Centers for Medicare & Medicaid Services (CMS) under the Clinical Laboratory Improvement Amendments (CLIA). This means that many Lyme diagnostic tests currently being used would need to be submitted to the FDA for approval in order to continue to be marketed. FDA approval is time-consuming and costly. FDA approval is not assured and may rely on experts from the Infectious Diseases Society of America to determine whether a test should be approved.
Over 5,000 patients responded to our last survey on the impact of Lyme disease on patient quality of life, making it the largest survey of Lyme patients ever conducted. The results of that study, which found that Lyme patients had a significantly impaired quality of life were published in a peer reviewed journal, and are available at https://peerj.com/articles/322/.
To progress through this survey, please use the following navigation, links. Note that once you start the survey, you will need to complete it fully. You cannot save it and return to it later. The survey should take 10-15 minutes to complete.
--Click the Next>> button to continue to the next page
--Click the Previous>> button to return to the previous page
--Click the Exit the Survey Early>> button if you need to exit the survey
--Click the Done>> button to submit your survey
If you have any questions, please contact me at lbjohnson@lymedisease.org. For more information on LymeDisease.org, go to www.lymedisease.org.
Submit only one survey response regarding any one person. To avoid duplicates, only one response is permitted per computer.
PARTICIPANT REQUIREMENTS:
You are invited to participate in this research project if you have been diagnosed by a healthcare provider with Lyme disease, are 18 years of age or older, and live in the United States.
VOLUNTARY PARTICIPATION AND QUESTIONS:
Your participation in this research study is voluntary. You may choose to discontinue participation in the survey at any time. If you have any questions or if you wish to discontinue participation contact Lorraine Johnson at lbjohnson@lymedisease.org.
CONFIDENTIALITY:
Your responses will be confidential and identifying information such as your name, email address or IP address will not be disclosed. We will do our best to keep your information confidential. All data is stored in a password protected electronic format or in a secure location.
