The multiple sclerosis rating scale, revised (MSRS-R): development, refinement, and psychometric validation using an online communityPaul Wicks
PatientsLikeMe Inc, 155 Second Street, Cambridge, MA 02141, USA
Health Qual Life Outcomes 10:70. 2012
..Existing measures of functional status were inadequate, clinician-reported, focused on walking, and burdensome to complete. In response, we developed the Multiple Sclerosis Rating Scale (MSRS)...
Hypothesis: higher prenatal testosterone predisposes ALS patients to improved athletic performance and manual professionsPaul Wicks
PatientsLikeMe, Research and Development, Cambridge, Massachusetts 02141, USA
Amyotroph Lateral Scler 13:251-3. 2012
..This hypothesis may serve as a starting point for debate and discussion over the nature of ALS risk factors, as well as generating a number of specific testable hypotheses that may yield insight into the genesis of the disease...
- Perceived benefits of sharing health data between people with epilepsy on an online platform
Paul 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...
- 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
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- 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...
- 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?"..
- 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'...
- 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...
- Evaluation of an online platform for multiple sclerosis research: patient description, validation of severity scale, and exploration of BMI effects on disease course
Riley Bove
Program in Translational NeuroPsychiatric Genomics, Department of Neurology, Institute for the Neurosciences, Brigham and Women s Hospital, Boston, Massachusetts, United States of America
PLoS ONE 8:e59707. 2013
..com (PLM), for research in multiple sclerosis (MS). An investigation of the role of body mass index (BMI) on MS disease course was conducted to illustrate the utility of the platform...
