MyLymeData Frequently Asked Questions

Signing up is easy. Just fill in the required information. Then, simply take your first survey.

The goal of the MyLymeData study is to create knowledge that can benefit patients with Lyme disease. Many patients with Lyme disease remain ill after antibiotic treatment. We need to understand why some patients respond to treatment and others don’t. We also need to understand how Lyme disease progresses, how co-infections affect the illness, how the disease is transmitted, and which treatments are the most effective. Our ultimate goal is to improve the quality of life for patients with Lyme disease.

Your data will be used for Lyme disease research that is patient-centered. Patient-centered research is intended to improve quality of life for patients with Lyme disease or to increase our understanding of the disease. Your data will not be sold or leased to others.

New technologies allow patients to pool their data for research. When the data of hundreds or thousands of patients is pooled we can begin to see important patterns about the illness. Your data, without your name or other identifiers, will be combined with the data of other patients and analyzed to help begin to answer important questions about the course of illness and factors that affect whether patients remain ill or become well.

The LymeDisease.org study team will analyze this data on its own and in partnership with researchers and clinicians who are interested in patient-centered research. Independent researchers working on patient-centered research projects approved by LymeDisease.org. may also analyze de-identified patient data.

LDo will provide information about its findings to the community through blogs, publication of white papers, and peer-reviewed articles. Our previous surveys have been published in peer-reviewed publications and used to inform healthcare policymakers on issues affecting the community. Our last published survey has been downloaded over 4,000 times. These presentations and publications will never include any information that could identify you.

From time-to-time we may be contacted by researchers who are recruiting patients for studies and clinical trials (for example testing new treatments). If outside researchers want to contact you regarding a patient-centered research project that we have approved, LDo will let you know about the study so that you can decide whether you want to provide your contact information to the researcher. We will not disclose your contact information to others.

After your first survey, you will receive reminders to take the next survey. We expect these to occur quarterly. We’ll ask you how you are doing, what treatments you are using, and some other questions about your Lyme disease. The surveys will be brief (10-30 minutes) and can be completed in more than one sitting, if needed. MyLymeData also allows you to upload test results.

Anyone in the United States who has been diagnosed with Lyme disease. That means adults and children. We are tracking treatment response among patients who are ill, but we are also interested in people who have gotten better. We are interested in information about both living patients and patients who have died of Lyme disease or its complications. Information regarding patients who have died is important to understand the course of illness in Lyme disease. We encourage parents or other surviving family members to join MyLymeData. Your participation in MyLymeData is voluntary and you can withdraw at any time by contacting mylymedata@lymedisease.org.

If you are of legal age (18 years old in most states), simply sign up. Otherwise, a parent, legal guardian or custodian of the patient must give consent and enter the patient’s information. Once the patient is of legal age, direct consent from the patient will be obtained. Sometimes people with Lyme disease need others to help enter information—this is allowed. Surviving family members may create an account for a patient who has died.

Currently, MyLymeData is designed for patients who were infected in the United States as the ticks that transmit Lyme disease, the illnesses transmitted, and the symptoms can be different in other countries. If you are from another country, you can still register and tell us where you were bitten. We will plot these on a global map. You can also let us know if you would like to be contacted if we launch a survey in your country. Our expectation is to introduce these out over time.

We take privacy VERY seriously. Participation in this registry is entirely voluntary, and you do not have to share any information you do not want to. With few exceptions, you can simply skip questions you prefer not to answer. You are also free to withdraw from the registry at any time without having to provide any explanation. Simply contact the registry and all of your data will be removed from the database. Data accessed or assigned to a specific study prior to your request for removal cannot be retrieved from researchers that have already accessed it. We will only share de-identified data (without your name or identifying information) for projects that we have approved as patient-centered. For more information on privacy click here.

We have partnered with experts in the field of online protection and privacy to protect your information and keep it secure.  PatientCrossroads is an authorized contractor for the National Institute of Health in the development of global disease registries. Their programs are designed in accordance with applicable US privacy protection provisions of HIPAA (Health Insurance Portability and Accountability Act of 1996) as well as the Federal Information Security Management Act of 2002 (FISMA). FISMA compliant hosting is much more extensive than HIPAA and requires specific documented operational controls and security procedures, which are audited by an independent IT security firm annually to ensure compliance. Employees handling data must have a background check and pass strict security measures. Your information is stored off-site in a secured environment on secure Amazon servers located in the USA. All storage and transmittal is done in encrypted form.

Any personal information that could be used to identify you or your family is labeled with a special code. The code is securely stored with a password. Only authorized staff will be able to access the code and contact you if needed. Information that has had all of the personally identifying information changed to a code is called “de-identified.”

The benefits of participating in MyLymeData include helping to speed research in Lyme disease by sharing your data, seeing how you compare with other patients in MyLymeData, having access to clinical trials which may be conducted, and having the opportunity to ask questions that MyLymeData may be able to answer through analysis of pooled data.

Participation in the MyLymeData patient registry may help you or your child and others with Lyme disease or co-infections by increasing our understanding of Lyme disease. Researchers may learn whether and how treatments work. Medical professionals may be able to improve how they diagnose and treat Lyme disease.

The risks associated with taking part in MyLymeData are minimal. You may be uncomfortable answering some questions in the surveys. However, you do not need to share any information unless you want to. As described in the privacy question above, there are substantial safeguards in place to avoid a security breach. Should this unlikely event occur, all participants will be notified.

LymeDisease.org expects to partner with the National Disease Research Institute (NDRI) to store biospecimens such as blood and tissue donated by patients with Lyme disease. The NDRI is a federally funded non-profit that is regarded as the United States’ premier source of research tissue. By serving as the liaison between tissue and organ donors and the scientific community, NDRI is uniquely positioned to support breakthrough research in Lyme disease. However, even if LymeDisease.org partners with NDRI, any decision to donate biospecimens will be your choice. MyLymeData surveys also ask about whether you have donated biospecimens to other registries or had genetic testing performed.

An Institutional Review Board is an independent ethics committee that reviews research studies to protect the rights and welfare of research participants. The MyLymeData project has been approved by the Chesapeake Research Review, Inc. (Chesapeake IRB). Chesapeake IRB has been providing independent IRB services for research since 1993 and is accredited by The Association for the Accreditation of Human Research Protection Programs, Inc. (AAHRPP).

Please email us at MyLymeData@lymedisease.org if you have questions about the study or if you have difficulty signing up. If you have any questions or complaints about your rights as a research participant contact Chesapeake IRB, at 410-884-2900 (collect), by email at adviser@irbinfo.com, or by mail at Study Subject Adviser, Chesapeake IRB, 7063 Columbia Gateway Drive, Suite 110, Columbia, MD 21046.

Yes, you can take the survey on your computer, tablet or phone.