Navigation Links
PatientCrossroads Achieves Early Success With Patient Registry for Lyme Disease, Expanding Beyond its Focus on Rare Disorders
Date:12/9/2015

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 the MyLymeData 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.

About LymeDisease.org
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.

About PatientCrossroads
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.

Read the full story at http://www.prweb.com/releases/2015/12/prweb13104874.htm.


'/>"/>
Source: PRWeb
Copyright©2015 Vocus, Inc.
All rights reserved


Related biology technology :

1. PatientCrossroads Launches First Online Narcolepsy Patient Registry
2. PatientCrossroads Launches New Patient Registries
3. PatientCrossroads Fuels Development of New National Clinical Research Network
4. Regulus Achieves All Research Milestones in Collaboration with Biogen to Identify microRNA Biomarkers for Multiple Sclerosis
5. InformedDNA Achieves NCQA Utilization Management Certification
6. Stem Cell Training Achieves 2015 Goal, Training 402 Physicians in 27 Cities Worldwide
7. BioNano Mapping Technology Achieves Most Contiguous Clone-free Human Genome Assembly to Date
8. BioAmber Achieves Important Milestone: Sarnia Construction Substantially Complete
9. Cynata Achieves Major Stem Cell Manufacturing Milestone
10. Charm Sciences Achieves Independent Validation of First 15 Minute Quantitative Screening Method for Aflatoxin M1
11. Innovative Formulations Achieves GMP Compliance and Success with InstantGMP™ MES
Post Your Comments:
*Name:
*Comment:
*Email:
(Date:3/27/2021)... ... March 24, 2021 , ... ... Life Sciences and Healthcare firms of all sizes, adds depth to its team ... specialist. Pardillo, who earned his doctorate in computational chemistry from Florida International University ...
(Date:3/27/2021)... ... March 24, 2021 , ... ABI Wellness, ... and reporting approach designed under CEO Mark Watson, today announced a webinar dedicated ... featuring guest speakers Dr. Cameron Clark, Neuropsychologist and Founder of Sharp Thinking, and ...
(Date:3/27/2021)... ... ... The Xtalks editorial team is pleased to announce the launch of the ... joined by editorial team members Ayesha Rashid, Sydney Perelmutter and Mira Nabulsi to discuss ... including insights from industry experts. , The Xtalks Life Science podcast will feature ...
(Date:3/23/2021)... Conn. (PRWEB) , ... March 23, 2021 , ... ... develops solutions for characterizing microbiome populations down to the strain level, recently unveiled ... applications. , Not all microbes are created equal: some are easy to ...
Breaking Biology Technology:
(Date:3/27/2021)... ... March 25, 2021 , ... Phlexglobal announced ... Planet Group, has selected Phlexglobal and its innovative regulatory SaaS software, PhlexSubmission, as ... a comprehensive review of five regulatory software companies, with the review team including ...
(Date:3/27/2021)... ... 25, 2021 , ... The 2021 Virtual Conference on Clinical Trial Supply-Europe ... More and more, clinical trial supply conferences are featuring speakers and forums that ... Asymmetrex’s founder and CEO, James L. Sherley, M.D., Ph.D., presented a talk ...
(Date:3/23/2021)... ... March 23, 2021 , ... G-CON Manufacturing (G-CON), the ... by Matica Biotechnology (Matica Bio), a contract development and manufacturing organization (CDMO) specializing ... the cleanroom build out for its new GMP production facility in College Station, ...
Breaking Biology News(10 mins):