It’s been two years!! ALS Community Report

Posted March 17th, 2008 by

PatientsLikeMe was born of a passion to provide the best tools for patients to participate in their own care, share experiences and change the way medical research is done.Thanks to our members and the dedication of our growing team, our first community, ALS, has now been open to the public for two years! The community includes over 1650 patients, the U.S. members represent over 4% of all the ALS patients in the States.

Over three quarters of our members have entered substantive information about their treatment history and status. Each time a member adds information, that information benefits how other people care for themselves and heightens how we as a community contribute to medical knowledge and drug discovery.

Already we have published exciting findings from our community. For example, hundreds of ALS patients completed Paul Wick’s survey on Excessive Yawning and the results were published in a psychiatry journal (Acta Psychiatica Scandinavica). Another exciting development in ALS is first real time drug study – on the use of Lithium in ALS. More published and presented research will soon be featured on our blog and in a new section on the site. Each project demonstrates how we, as a community, can conduct research quickly and easily to accelerate the pace of gathering and disseminating new knowledge. SO THANK YOU.

Lithium Re - Screen shot

To show you how the research process works and to celebrate our second anniversary, we have put together a report on our ALS community. In it we observe that the community is a good one to study in that it looks a lot like the ALS patient population at large. As is true for ALS generally, there are 3 men for each 2 women in the community and mostly sporadic cases (8% hereditary, 92% sporadic). And, PatientsLikeMe members experience all types of onset with the most common being leg and arm onset (39% and 37% respectively). The only real difference is that site members are a little younger than the average (48.4 at onset on the site compared to 55 generally). In the report, we also looked at how different ways to better understand ALS and connect patients. In the figure below, we look at the relationship between age at onset and onset type. Separating each age group, we see whether different types of ALS present themselves at different times of life. This can contribute to scientific understanding of the disease. Arm onset appears to affect slightly younger people than bulbar and leg onset. Also, when each number in the chart is a link on the site, it will help you locate others like you and of interest to you. See the next figure. Figure 1 We also report early stage research of our own. Specifically, we look at how patients are utilizing health services and how our members with different types of onset are doing over time. One surprising finding is how long some people report between experiencing their first ALS symptom and receiving a diagnosis. In the figure below, the most common length of time between onset and diagnosis was 12 – 18 months. There are also a number of patients who did not receive a diagnosis for several years. We are going to do some more research into these results.
figure2.png

Lastly, we begin to look at how ALS differs by onset. We see from our user reported Functional Rating Scale that bulbar onset patients experience a faster decline than users with arm or leg onset. People with bulbar onset experience the same level of decline in 8 months as leg and arm onset patients experience in 16 months.

Through member participation, we are gathering the information we need to better understand the course and characteristics of ALS. At the same time, we are creating methods to use patient supplied data to discover and evaluate the effects of new possible treatments. If you are an ALS patient or caregiver, please take a look at the full report (Note: you must be a registered user).

PatientsLikeMe member JeanaFrost


7 Comments

  1. Great job on the site. I wanted a place for people to share their stories and created http://www.ourMSstories.com by myself – but I love all the charts and graphs and information you have been able to gather. Giving people a voice in an entirely new way. Keep up the great work.
    -Caren

  2. I received the ALS websight update today and deleted it by mistake. May I please receive annother mailing? Thank you.

  3. I saw the CBS News profile on Patients Like Me and wanted to contribute some information that some people may find helpful. For those of you unaware of the Center For Self-Healing in San Francisco i strongly suggest you contact them. Meir Schneider has worked with all kinds of neurological conditions, including ALS and MS as well as muscular dystrophy, vision disorders, rheumatoid arthritis, etc for over 30 years with remarkable impact. You can check out http://www.self-healing.org. It’s free and many people could be helped to have a longer and more empowered life.

  4. The onset of my ALS began in 2/07 altho the final diagnosis occurred in 11/08. The initial diagnosis was that my leg weakness was attributable to my having taken statins for a number of years and leg muscle weakness is a recognized side effect.There have been and continue to be a number of studies/reports on the possible connection between statins/ALS, one of which is underway at Stanford Univ.My situation would appear to be one of those cases.I am currently participating in a clinical trial at the Forbes Clinic in San Francisco on the benefit of lithium, the trial is underway at ten locations around the country involving about 100 patients.It is a 52 week trial which began about a month ago.

  5. i would like to know if there is current research on high levels of antioxidants as a treatment modality for ALS to lessen symptoms. If the free radical theory contributes to the cause or symptoms of ALS, can taking high levels of
    antioxidants cause additional problems or is there such a thing as a toxic blood or organ level? r2

  6. I’ve been diagnosed recently with ALS(10/6/10),but my symtoms began about a year and a half ago. I’ve been ambulatory with a reg. cane held in the right hand for the past three mos. I am 71y.o. and I’ve been a physical therapist for the past 40 years. I also have a Ph.D., in biomechanics. My purpose of writing this note is to find more information about ALS, by a mutual exchange. I’ be interested in hearing from anyone. Thank you

  7. 6.I’ve been diagnosed recently with ALS(10/6/10),but my symptoms began about a year and a half ago. I’ve been ambulatory with a reg. cane held in the right hand for the past three mos. I am 71y.o. and I’ve been a physical therapist for the past 40 years. I also have a Ph.D., in biomechanics. My purpose of writing this note is to find more information about ALS, by a mutual exchange. I’ be interested in hearing from anyone. Thank you

    Comment by Harry Nafpliotis — January 4, 2011 @ 5:21

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