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We've integrated PatientsLikeMe with ClinicalTrials.Gov to develop a clinical trials matching tool! This allows you to find trials you might be eligible for (including trials of drugs, devices, therapy, or non-interventional studies such as genetics or questionnaires) based on your age, sex, conditions, and location. Click now to find out about trials for patients like you.
In 2008, a small Italian study was published suggesting that the drug Lithium could slow the progression of ALS. In response, hundreds of members of PatientsLikeMe began taking the drug and using a new tool and a matching algorithm to conduct a patient-lead observational study. The results of that study, published in Nature Biotechnology, show that we were unable to replicate the promising findings of the Italian group, but that PatientsLikeMe may provide a useful way of conducting observational studies faster and cheaper than existing trial methods.
In September of 2011, Jamie Heywood spoke at the 10th Dialogue on Science at the Academia Engelberg Foundation on our modern understanding of personalized medicine from genetics through to phenotype, from mice to humans, and from Hippocrates to Google.
Lift! is a European conference that brings together innovators in design, healthcare, and social architecture. Here, R&D Director Paul Wicks contrasts the popular culture representation of the future we were promised against the current state of healthcare, with particular reference to the "Web 2.0" world
PatientsLikeMe R&D Director Paul Wicks, presenting at TEDx Berkshires, walks through the medical decision process faced by patients and clinicians trying to manage their illness in a world lacking in data.
PatientsLikeMe Chairman Jamie Heywood presented some experimental new features on the site at the prestigious TEDMED conference last fall; click here to watch the video of his inspiring and insightful presentation to a global audience of scientists, industry leaders, and researchers.
Eurordis is a patient-driven alliance of patient organisations and individuals active in the field of rare diseases. R&D Director Paul Wicks presented at their annual membership meeting in May 2009 alongside other pioneers such as Duchenne Connect to an audience of patient advocates, non-profit staff, and patients.
We found a range of benefits for people with epilepsy using our site including improved understanding of their seizures, finding another patient like them, and learning more about symptoms or treatments. Before they came to PatientsLikeMe, 1 in 3 patients had never met another person with epilepsy. The more friends they had with epilepsy on the site, the more benefits they experienced.
When a small Italian study reported that lithium carbonate had the potential to slow the progress of ALS, hundreds of users of our site started taking the drug under the supervision of their physicians. Although we were unable to replicate the promising findings, we hope that this study demonstrates the power of sharing data to advance science and medicine.
When a drug is approved by the FDA, it is for a specific purpose or "indication". However, we noticed that many of our users said they had been prescribed drugs for purposes not included in the original approval, known as "off-label" usage. In this award-winning study, we sought to discover the experiences of patients taking two widely-used treatments for off-label purposes.
For MS patients, taking their disease-modifying treatments on time can make the difference in terms of relapses, progression, and long-term function. Using the voice of our patients we constructed a scale that measures all the barriers that get in the way of our patients being adherent to their drugs, in the hope of improving their outcomes.
For this project we collaborated with the University of Oxford. In a survey of our ALS patients, we found that patients with an arm-onset were most likely to get the condition first in their "dominant" hand (i.e. right handers were more likely to get it in their right hand first); the same was not true for those with leg-onset ALS. This finding is consistent with the idea of a link between exercise and ALS.
Results from our user survey suggest that our members perceive a variety of benefits from using PatientsLikeMe, including feeling better informed about their treatment decisions, better communication with their healthcare providers, and improved quality of life!
A summary of recent advances on the PatientsLikeMe site including the potential for our system to identify the potential for off-label uses of existing drugs.
Research initiated by one of our ALS patients suggested the clinical gold-standard rating scale wasn't sensitive to the function of patients with advanced disease so with their help we extended it to add three more items
Problem gambling is a problem for up to 13% of Parkinson's disease patients according an online study conducted on our site, with some racking up thousands of dollars in debt.
A survey of our ALS community shows their doctors aren’t telling them about the possibility of cognitive dysfunction, but establishes that patients and caregivers would like to know more
Analysis of the comments posted on patient’s profile pages shows that patients are using health data to learn more about opportunities to improve their outcomes
A novel report about excessive yawning lead to a study showing this irritating symptom is twice as common in a subset of ALS patients
PatientsLikeMe is frequently cited by other publications in fields as diverse as Law, Sociology, and Medicine. See our current listing on Google Scholar.
This FAQ document contains details of our policies for collaborating with external researchers; feel free to contact us if you have any other questions.