Home > Research

Research Tools

ALS Genetics Search Engine

ALS Genetics Search Engine

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.

Clinical Trial Awareness

Eli Lilly & Company

Eli Lilly & Company

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

Novartis Pharmaceuticals Corporation

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.

Public Research and Presentations

"The Big Idea my Brother Inspired"

"The Big Idea my Brother Inspired"

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.

Manage your epilepsy like a PRO

Manage your epilepsy like a PRO

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.

Parkinson’s Genetics Engine to Enhance Research Through Shared Data

Parkinson’s Genetics Engine to Enhance Research Through Shared Data

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.

Charting the Course of PLS and PMA

Charting the Course of PLS and PMA

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.

Gambling in online PD patients higher than previously reported

Gambling in online PD patients higher than previously reported

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.

A history of ALS online

A history of ALS online

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.

Letter to the editor on Excessive Yawning

Letter to the editor on Excessive Yawning

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.

Publications from Our Team

Concordance between site of onset and limb dominance in amyotrophic lateral sclerosis

Concordance between site of onset and limb dominance in amyotrophic lateral sclerosis Journal of Neurology, Neurosurgery, & Psychiatry

By Martin Turner, Paul Wicks, Catherine Brownstein, Michael Massagli, Maria Toronjo, Kevin Talbot, Ammar Al-Chalabi

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.

Sharing Health Data for Better Outcomes on PatientsLikeMe

Sharing Health Data for Better Outcomes on PatientsLikeMe Journal of Medical Internet Research

By Paul Wicks, Michael Massagli, Jeana Frost, Catherine Brownstein, Sally Okun, Timothy Vaughan, Richard Bradley, James Heywood

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!

The Potential Research Impact of Patient Reported Outcomes on Osteogenesis Imperfecta

The Potential Research Impact of Patient Reported Outcomes on Osteogenesis Imperfecta Clinical Orthopaedics and Related Research

By Catherine Brownstein & Paul Wicks

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?

Modifiable barriers to enrollment in American ALS research studies

Modifiable barriers to enrollment in American ALS research studies Amyotrophic Lateral Sclerosis

By Richard S. Bedlack‌, Paul Wicks‌, James Heywood‌ & Edward Kasarskis‌

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.

The power of social networking in medicine

The power of social networking in medicine Nature Biotechnology

By Catherine Brownstein, John Brownstein, David S. Williams III, Paul Wicks, James Heywood

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.

Community Reports

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!”

Publications that feature PatientsLikeMe

Google Scholar

Google Scholar

PatientsLikeMe is frequently cited by other publications in fields as diverse as Law, Sociology, and Medicine. See our current listing on Google Scholar.

R&D Policy

R&D Policy

R&D Policy

This FAQ document contains details of our policies for collaborating with external researchers; feel free to contact us if you have any other questions.