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The research team brings a variety of expertise to the design of PatientsLikeMe and the study of the data collected here. Our team’s specialities include genetics, sociology, psychology, nursing, drug discovery, predictive modeling, and user behavior.
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.
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.
Oct 22, 2009
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.
Oct 22, 2009
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.
Jun 12, 2009
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.
May 29, 2009
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.
May 20, 2009
The latest discovery in ALS research prompts a preliminary analysis of our ALS genetic data
May 20, 2009
To celebrate Parkinson's awareness month we share some real-world data from our community
Jan 07, 2009
This slideshow highlights some of the new features we’ve recently developed on PatientsLikeMe.
Jan 05, 2009
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.
Dec 15, 2008
Dr Jeana Frost reports back on the AGM of the American Medical Informatics Association (AMIA).
Nov 16, 2008
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.
Sep 24, 2008
A lot of people ask us, just how representative is your data? In this blog post we have some preliminary answers.
Aug 20, 2008
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.
May 27, 2008
“This project investigates how patients react to the shared use of what is often considered private information: personal health data.”
Feb 12, 2008
A study of our members found that doctors rarely warn patients and caregivers about known psychological and cognitive consequences of ALS.
Jan 05, 2008
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.
Dec 20, 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.
Oct 22, 2009
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.
May 20, 2009
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
May 20, 2009
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.
Nov 01, 2008
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.
Nov 01, 2008
Analysis of symptom terms added by our users showed a 93% match with terms in the SNOMED CT clinical vocabulary database
May 01, 2008
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
May 01, 2008
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
May 01, 2007
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!”
Jun 26, 2009
PatientsLikeMe is frequently cited by other publications in fields as diverse as Law, Sociology, and Medicine. See our current listing on Google Scholar.
Jul 16, 2009
This FAQ document contains details of our policies for collaborating with external researchers; feel free to contact us if you have any other questions.