Perceived benefits of sharing health data between people with epilepsy on an online platformPaul Wicks
PatientsLikeMe Inc, Cambridge, MA 02141, USA
Epilepsy Behav 23:16-23. 2012
..Controlled sharing of health data may have the potential to improve disease self-management of people with epilepsy...
- Pathological gambling amongst Parkinson's disease and ALS patients in an online community (PatientsLikeMe.com)
Paul Wicks
Research and Development, PatientsLikeMe Inc, Cambridge, Massachusetts, USA
Mov Disord 24:1085-8. 2009
..Thus, the higher prevalence of compulsive behavior in PD may relate to damaged reward pathways or medication rather than to the effects of living with a chronic progressive neurological disorder per se...
- Measuring function in advanced ALS: validation of ALSFRS-EX extension items
P Wicks
PatientsLikeMe Inc, Research and Development, Cambridge, MA 02142, USA
Eur J Neurol 16:353-9. 2009
..There is a research need to monitor patient function at the end of life, particularly in the face of severe impairment or 'locked in syndrome'...
- Sharing health data for better outcomes on PatientsLikeMe
Paul Wicks
PatientsLikeMe Inc, Research and Development, 155 2nd Street, Cambridge, MA 02141, USA
J Med Internet Res 12:e19. 2010
..The goal of the website is to help patients answer the question: "Given my status, what is the best outcome I can hope to achieve, and how do I get there?"..
- Use of an online community to develop patient-reported outcome instruments: the Multiple Sclerosis Treatment Adherence Questionnaire (MS-TAQ)
Paul Wicks
PatientsLikeMe, Research and Development, Cambridge, MA 02141, USA
J Med Internet Res 13:e12. 2011
..Patients with multiple sclerosis (MS) may face barriers, such as treatment fatigue, memory problems, or side effects, that may influence their adherence to medication...
- Accelerated clinical discovery using self-reported patient data collected online and a patient-matching algorithm
Paul Wicks
Research and Development, PatientsLikeMe Inc, Cambridge, Massachusetts, USA
Nat Biotechnol 29:411-4. 2011
....
- The potential research impact of patient reported outcomes on osteogenesis imperfecta
Catherine A Brownstein
PatientsLikeMe Research and Development, 155 2nd St, Cambridge, MA 02141, USA
Clin Orthop Relat Res 468:2581-5. 2010
..Because treatment is not standardized and is often experimental, information on the success of different methods is usually not available or well documented...
