PatientsLikeMeInsightsTM – our query engine that dives deeper into the data (e.g., weight gain in Cymbalta/Lyrica patients)
As I note in my presentation, there are a lot of caveats to what I have up on the screen. We as an organization believe in being careful about throwing terms around like “evidence.” So what you see in this video is not evidence – it’s the first look at some of the data we have to work with and what we can do with it as we continue on our path to create evidence. With no uncertain terms, though, what you see here is the beginning of the insight we can generate around clinical outcomes of patients and the real-world impact of treatments.
You can search for patients by more than 10 seizure types, such as simple partial, myoclonic, atonic, and tonic-clonic.
You can also search by 19 different epilepsy types, including temporal lobe, frontal lobe, occipital lobe, juvenile myoclonic, Lennox-Gastaut syndrome, and epilepsy with grand mal seizures on awakening.
Others in the community have indicated a causative comorbidity for their condition, such as:
Head injury (242 patients to date)
Brain tumor (70 patients to date)
Stroke (38 patients to date)
Encephalitis (34 patients to date)
543 patient members were diagnosed recently (5 years or less) and 823 were diagnosed 20+ years ago.
As part of this first survey, members told us the top issues most important to them – indicating the top three as overall quality of life, seizure worry (i.e., impact of seizures) and mental activity (i.e., thinking, concentrating, memory).
How are our members treating their condition?
Patients are using thousands of treatments, including prescription drugs, supplements, over-the-counter medications, life-style modifications, procedures, and more.