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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.

See how ALS patients taking an experimental treatment, lithium, are doing in real-time

See how ALS patients taking an experimental treatment, lithium, are doing in real-time

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.

Clinical Trial Awareness

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

Parkinson’s Genetics Engine to Enhance Research Through Shared Data

Oct 22, 2009

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

Oct 22, 2009

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.

Video from the European Organization for Rare Diseases (EURORDIS) Annual Meeting in Athens, Greece

Jun 12, 2009

Video from the European Organization for Rare Diseases (EURORDIS) Annual Meeting in Athens, Greece

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.

Gambling in online PD patients higher than previously reported

May 29, 2009

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 new gene for ALS: What sharing your genetics could mean for research

May 20, 2009

A new gene for ALS: What sharing your genetics could mean for research

The latest discovery in ALS research prompts a preliminary analysis of our ALS genetic data

Parkinson's Disease: Real-World Data

May 20, 2009

Parkinson's Disease: Real-World Data

To celebrate Parkinson's awareness month we share some real-world data from our community

New features for ALS Patients

Jan 07, 2009

New features for ALS Patients

This slideshow highlights some of the new features we’ve recently developed on PatientsLikeMe.

A history of ALS online

Jan 05, 2009

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.

The patient’s perspective from AMIA

Dec 15, 2008

The patient’s perspective from AMIA

Dr Jeana Frost reports back on the AGM of the American Medical Informatics Association (AMIA).

PatientsLikeMeListen(TM) Report on Tysabri(R)

Nov 16, 2008

PatientsLikeMeListen(TM) Report on Tysabri(R)

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.

How representative are PatientsLikeMe patients to the general population?

Sep 24, 2008

How representative are PatientsLikeMe patients to the general population?

A lot of people ask us, just how representative is your data? In this blog post we have some preliminary answers.

Parkinson’s Disease: More Non-Motor Symptoms for Younger Sufferers

Aug 20, 2008

Parkinson’s Disease: More Non-Motor Symptoms for Younger Sufferers

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.

Social Uses of Personal Health Information Within PatientsLikeMe, an Online Patient Community: What Can Happen When Patients Have Access to One Another’s Data

May 27, 2008

Social Uses of Personal Health Information Within PatientsLikeMe, an Online Patient Community: What Can Happen When Patients Have Access to One Another’s Data

“This project investigates how patients react to the shared use of what is often considered private information: personal health data.”

ALS patients request more information about cognitive symptoms — PatientsLikeMe study to appear in the upcoming issue of the European Journal of Neurology

Feb 12, 2008

ALS patients request more information about cognitive symptoms — PatientsLikeMe study to appear in the upcoming issue of the European Journal of Neurology

A study of our members found that doctors rarely warn patients and caregivers about known psychological and cognitive consequences of ALS.

Presentation to the 18th International ALS/MND Symposium about PatientsLikeMe

Jan 05, 2008

Presentation to the 18th International ALS/MND Symposium about PatientsLikeMe

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.

Letter to the editor on Excessive Yawning

Dec 20, 2007

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

Oct 22, 2009

The power of social networking in medicine Nature Biotechnology

By Brownstein CA, Brownstein JS, Williams DS 3rd, Wicks P, Heywood J

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

Measuring function in advanced ALS: Validation of the ALSFRS-R extension items European Journal of Neurology 16(3):353-9

By Wicks P, Massagli M, Wolf C, Heywood J

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

Pathological gambling amongst Parkinson's disease and ALS patients in an online community Movement Disorders 24(7):1085-1088

By Wicks P, Macphee GJ

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

How the Social Web Supports Patient Experimentation with a New Therapy: The demand for patient-controlled and patient-centered informatics AMIA Annu Symp Proc. 2008 Nov 6:217-21

By Frost JH, Massagli MP, Wicks P, Heywood J.

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

PatientsLikeMe: Consumer Health Vocabulary as a Folksonomy AMIA Annu Symp Proc. 2008 Nov 6:682-6

By Smith CA, Wicks PJ

Analysis of symptom terms added by our users showed a 93% match with terms in the SNOMED CT clinical vocabulary database

May 01, 2008

ALS patients request more information about cognitive symptoms Eur J Neurol. 2008 May;15(5):497-500. Epub 2008 Mar 5

By Wicks P, Frost J.

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

Social uses of personal health information within PatientsLikeMe, an online patient community: what can happen when patients have access to one another’s data J Med Internet Res. 2008 May 27;10(3):e15

By Frost JH, Massagli MP

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

Excessive yawning is common in the bulbar-onset form of ALS Acta Psychiatrica Scandinavica. 2007 116(1):76

By Wicks P

A novel report about excessive yawning lead to a study showing this irritating symptom is twice as common in a subset of ALS patients

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!”

Dec 01, 2008

2008 PatientsLikeMe HIV Community Report: Embracing the Positive

Mar 17, 2008

It’s been two years!! ALS Community Report

Jan 09, 2008

Community Report: The composition and experience of the Multiple Sclerosis community

Publications that feature PatientsLikeMe

Google Scholar

Jun 26, 2009

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

Jul 16, 2009

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.