Search for ALS patients on a variety of parameters including known disease-causing genetic mutations (e.g. SOD1, ALS2, VAPB). Over time we will show patients with the inherited familial form of ALS (FALS) more information about their likely progression rates and publish our findings to the scientific field.
View FRS scores before and after starting lithium, easily compare individual dosages and blood levels, and filter results by a rich set of patient characteristics.
Lilly, a leading innovation-driven corporation, is developing a growing portfolio of pharmaceutical products by applying the latest research from its own worldwide laboratories and from collaborations with eminent scientific organizations. Headquartered in Indianapolis, Ind., Lilly provides answers - through medicines and information - for some of the world's most urgent medical needs.
Novartis Pharmaceuticals Corporation wants to improve patients’ lives by providing customers with innovative science and differentiated healthcare solutions delivered by diverse and engaged talent with integrity, passion and focus on performance.
PatientsLikeMe Chairman Jamie Heywood presented some experimetnal 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.
Our new epilepsy community includes an ambitious research project to understand the quality-of-life impact that seizures can have through the use of patient-reported outcomes (PROs). This video shows the aims of the project and what patients get back from participating.
As part of our commitment to supporting genetics discovery, PatientsLikeMe recently partnered with 23andMe, aiding them in their research effort to get 10,000 Parkinson’s patients for a groundbreaking research study. Now patients who have found out about their genetic information can find other patients like them through our advanced search feature.
Primary Lateral Sclerosis (PLS) and Progressive Muscular Atrophy (PMA) are two rare variants of the disease ALS. Now, patient-reported data on PatientsLikeMe have provided the first insights into how fast patients with these diseases are progressing relative to their peers.
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.
Research carried out in our Parkinson's Disease and ALS communities suggests that 13% of PD patients and 3% of ALS patients could be considered to have a gambling probelem. This is higher than previous reports in PD of 4-7% rates of pathological gambling.
The latest discovery in ALS research prompts a preliminary analysis of our ALS genetic data
To celebrate Parkinson's awareness month we share some real-world data from our community
This slideshow highlights some of the new features we’ve recently developed on PatientsLikeMe.
Dr Paul Wicks recently presented this slideshow at the 19th International Symposium on ALS/MND in Birmingham, UK, which charts the development of sites for people with ALS before PatientsLikeMe right up to the present day.
Dr Jeana Frost reports back on the AGM of the American Medical Informatics Association (AMIA).
Read our PatientsLikeMe Listen report examining the effects that adverse event reports of patients on the drug Tysabri had on the views of our MS patient community.
A lot of people ask us, just how representative is your data? In this blog post we have some preliminary answers.
A study examining the prevalence of non-motor symptoms among Young-Onset Parkinson’s Disease patients (with an onset before 40 years of age) and patients with “classic” Parkinson’s.
“This project investigates how patients react to the shared use of what is often considered private information: personal health data.”
A study of our members found that doctors rarely warn patients and caregivers about known psychological and cognitive consequences of ALS.
A narrated slideshow by Paul Wicks featuring a brief history of PatientsLikeMe, a tour of the site, and results from research studies carried out in 2007.
In response to a journal article and conversations in the forum, PatientsLikeMe carried out a unique study that found that painful, uncontrollable “excessive yawning” was relatively common in the bulbar-onset form of ALS. The results were published in the journal Acta Psychiatrica Scandinavica in 2007.
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!
Osteogenesis imperfecta (OI) is an inherited connective tissue disorder with many phenotypic presentations ranging from mild to severe. It is often called “brittle bone disease.” In this speculative paper we therefore asked if social networking can make OI patients’ lives better. How would a bone disorder community work? Is it possible for patients to know how well they are doing in comparison to others like them, and if they are getting the most successful treatment for their disease?
Enrollment in ALS research studies is surprisingly low. PatientsLikeMe conducted an online patient surveys that help identify some of the reasons. These include failure to invite patients to enroll, especially patients who have already participated in prior studies. Also included are patient concerns about the cost of participation, and confusion about several aspects of studies being offered. Along with prior work, these data suggest specific steps that can be taken to improve enrollment.
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.
Patients aren’t just using the internet to search for health information, they’re also using PatientsLikeMe to conduct natural experiments to investigate treatment efficacy.
Analysis of symptom terms added by our users showed a 93% match with terms in the SNOMED CT clinical vocabulary database
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 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
A novel report about excessive yawning lead to a study showing this irritating symptom is twice as common in a subset of ALS patients
Where do you fit in? To help you get a better understanding of where you are relative to the rest of the coummunity we periodically generate reports that will give you an overview of who is here; where they’re from their demographics and their experience of their condition. Take a look and connect with other “patients like you!”
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.