Metrics and Monitoring Disease Progression …
I have joined “PatientsLikeMe” at http://patientslikeme.com and have found it to be very helpful in monitoring and sharing my ALS progression/journey just by answering simple “survey” type questions in several categories. I plan to provide some exerpts from the survey in a subsequent blog post.
You can see my Profile below and my “condition character” — at this point in time I’m all Green (and I feel very lucky indeed).
Others are not as lucky as you can see from the “condition character” below
Some information about patientslikeme:
PatientsLikeMe is committed to providing a better, more effective way to capture valuable results and share them with patients, healthcare professionals, and industry organizations that are trying to treat the disease.
Founded in 2004 by three MIT engineers whose collective experience spans from running the world’s only non-profit biotechnology laboratory to large-scale online commerce applications, PatientsLikeMe is a privately funded company dedicated to making a difference in the lives of patients diagnosed with life-changing diseases. Our personal experiences with ALS (Lou Gehrig’s disease) inspired us to create a community of patients, doctors, and organizations that inspires, informs, and empowers individuals. We’re committed to providing patients with access to the tools, information, and experiences that they need to take control of their disease.
In 1998, a young carpenter named Stephen Heywood was diagnosed with ALS. The Heywood family began taking charge of Stephen’s care, searching the world over for ideas that would extend his life and improve the way he lived. This set in motion a series of events that have led to PatientsLikeMe, a new system of medicine by patients for patients. We’re here to give patients the power to control their disease and to share what they learn with others. We’re here to help you.
Our goal is to enable people to share information that can improve the lives of patients diagnosed with life-changing diseases. To make this happen, we’ve created a platform for collecting and sharing real world, outcome-based patient data (patientslikeme.com) and are establishing data-sharing partnerships with doctors, pharmaceutical and medical device companies, research organizations, and non-profits. Contact us if you’re interested in working together to achieve our goals.
Our operating costs will be covered by partnerships with healthcare providers that use anonymized data from and permission-based access to the PatientsLikeMe community to drive treatment research and improve medical care. We only share anonymized data with trusted partners and all our patient information is kept safe and secure.