“Extraordinary enrollment” for MyLymeData
“We are demonstrating that large patient communities can benefit from patient registries as much as populations affected by rare disorders.”
Press release from PatientCrossroads, Dec. 9,2015:
PatientCrossroads, a leading provider of patient registries, announces that MyLymeData, a patient-powered research network, has achieved extraordinary enrollment in its first week—with more than 1,000 registered participants in the first week.
“This magnitude of patient demand demonstrates that the PatientCrossroads technology platform is well positioned to address large patient populations,” said Kyle Brown, founder of PatientCrossroads. “We are also very pleased with our partnership with LymeDisease.org.”
MyLymeData seeks to be the largest study of Lyme disease ever conducted. According to estimates from the Centers for Disease Control and Prevention (CDC), Lyme disease affects at least 300,000 people annually in the United States—a considerably larger patient population than is typical for PatientCrossroads patient registries, which generally focus on rare disorders.
Despite its greater prevalence, the tick-borne Lyme disease shares with rarer diseases a lack of information about the nature or severity of the disease, which prevents many people from getting correct diagnosis or treatments. The new patient registry and research platform, conceived and run by patients, will allow patients using the registry to learn from each other and help drive research to develop better treatments.
“We know so little about Lyme disease right now—we don’t know the optimal treatment, the natural progression of the disease or the role of co-infections,” said Lorraine Johnson, CEO of LymeDisease.org. “The largest chronic Lyme disease research study enrolled just 129 people—a sample size too small to provide meaningful results. With big data we can see accurately how different groups of patients respond to treatment. MyLymeData will help researchers improve diagnostics and treatments for this disease.”
The PatientCrossroads patient registry platform provides a secure portal for patients to share data, while safeguarding privacy. The platform is used by many NIH-funded patient registries, proven to provide rigorous data security.
MyLymeData Patient Registry Encourages Patient Engagement
The MyLymeData registry allows patients to quickly and privately pool their diagnosis and treatment experiences, for tracking the progress of Lyme disease patients over time. Medical researchers can use the large amounts of data collected to see patterns that help determine which treatments work best. Through the registry, patients can make valuable contributions to the advancement of knowledge about Lyme disease while retaining complete control over their personal medical data.
“We are demonstrating that large patient communities can benefit from patient registries as much as populations affected by rare disorders,” said Brown. “This kind of patient-centered and patient-controlled research lets patients learn from one another while also providing data that can drive research to improve the lives of all fellow disease sufferers, everywhere.”
Anyone diagnosed with Lyme disease (initially, in the United States; plans call for expansion later to other countries) can register for theMyLymeData research project—including patients who are currently sick or well, and both children and adults. Patients complete a survey about their Lyme disease experiences, symptoms, treatments and results and can update the information periodically.
Founded in 1989, LymeDisease.org advocates nationally for high-quality, accessible health care for patients with Lyme and other tick-borne diseases. The organization is committed to shaping health policy through advocacy, legal and ethical analysis; education; physician training; and medical research. The mission of LymeDisease.org is to prevent Lyme disease, prevent early Lyme disease from becoming chronic, and obtain access to care for patients with chronic Lyme disease. More information is available at https://www.lymedisease.org.
Since 2005, PatientCrossroads has pioneered the use of patient registries to accelerate therapeutic development and empower patients. PatientCrossroads registry programs connect patients with researchers, advocates and industry organizations working to understand or treat specific diseases and conditions. Dedicated to openly accessible registry programs, PatientCrossroads has been recognized for its efficacy through national and international awards and partnerships. Its groundbreaking CONNECT patient registry platform allows de-identified patient information from multiple disease to be shared and used to research diseases, find new treatments, and better educate and support patients and their families. For more information, visit http://www.patientcrossroads.com.
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- December 9, 2015 at 8:29 am
It would be nice if it were easier to find a doctor that is well versed on Lyme Disease, and accepts my insurrance. A more accurate test that is readily used to diagnose, rather than avoided by doctors. A medication that is affordable to everyone , and the willingness of doctors to treat their patients based on their individual symptoms, rather than the standard suggested. A doctor that will help you deal with the side affects of the toxic medications necessary to battle Lyme Disease., not just prescribe and send you on your way. AND, Most Importantly, it would be nice if the government would stand up and do something about the corruption involved in the pharmaceutical and insurrance companies, in regards to the controversy over the existance of the long term affects of Lyme Disease (Chronic Lyme Disease) and the likelyhood of co-infections, that tag along with this dreadfully debilitating disease. Reasonable medication prices and availability to all should be a government priority for all illnesses!!!
- December 11, 2015 at 6:47 am
I second that! I haven’t been diagnosed yet, for all the reasons you state. Just know I have a whole list of issues that I have been dealing with since a tick bite.
If and when I get diagnosed, I’d love to be part of My Lyme Data. The more information that’s put out there the more people get help. Would help if more doctors were open to alternative sources of information and not so set in their ways. What ever happened to intellectual curiosity?
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