In the past, LymeDisease.org has funded research at academic institutions to develop better diagnostic tests and to find a cure. For example, we have funded research projects at Stony Brook University (NY), the University of California at Davis, Stanford University, Johns Hopkins University, and the University of New Haven (CT).
Our current research efforts are focused on our big data patient registry and research platform, MyLymeData. MyLymeData is the first national large-scale longitudinal study of patients with Lyme disease. It is patient centered –more specifically– It was conceived by patients, is run by patients, and will address the issues that Lyme disease patients care about.
We expect MyLymeData to gather more data about Lyme disease than any research study has done before. We have enrolled over 7,000 patients, which puts us in the top 10% of patient registries in the nation. Our goal is to enroll 10,000.
How MyLymeData Can Assist Research
MyLymeData can assist research in many ways: For example, we can:
- Provide researchers with cross-sectional, subgroup and longitudinal data from our patient registry;
- Collect new data from those enrolled in MyLymeData;
- Provide data supporting a research hypothesis to underpin a research grant application;
- Assess patient needs, outcomes that matter to patients, and research priorities; and
- Help recruit patients for research studies.
- Provide long term follow-up for completed clinical trials
How To Apply
Researchers interested in using data from the MyLymeData registry or working with the MyLymeData project should complete the contact form below. We will then send you instructions on submitting an application. Once submitted, an administrator will forward the application to the MyLymeData Research Committee, which reviews applications on a rolling review schedule.
