PatientSpot Formerly Known as ArthritisPower

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

RECRUITING

Total Enrollment

40000 participants

Study Classification

OBSERVATIONAL

Study Start Date

2015-04-01

Study Completion Date

2025-03-01

Brief Summary

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Patient Power is a patient research network and database (registry) to collect prospective information about demographics, self-reported diagnoses and medications, and willingness to participate in research from participants with rheumatoid arthritis (RA), spondyloarthritis (SpA), other musculoskeletal conditions, chronic neurological conditions like migraine, chronic pulmonary conditions like Chronic Obstructive Pulmonary Disease (COPD), asthma, autoimmune dermatological conditions such as psoriasis, and other chronic inflammatory or immune-mediated conditions. In addition, since patients with chronic conditions often have other co-morbidities like cardiovascular health and obesity-related metabolic disorders, these conditions will also be included. Participants will provide information from their smartphones or personal computers. The information will be used by researchers and clinicians to help patients and their providers make better, more informed decisions about treatment of chronic conditions.

Detailed Description

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Patient Power is a patient research network and database (registry) to collect prospective information about demographics, self-reported diagnoses and medications, and willingness to participate in research from participants with rheumatoid arthritis (RA), spondyloarthritis (SpA), other musculoskeletal conditions, chronic neurological conditions like migraine, chronic pulmonary conditions like Chronic Obstructive Pulmonary Disease (COPD), asthma, autoimmune dermatological conditions such as psoriasis, and other chronic inflammatory or immune-mediated conditions. In addition, since patients with chronic conditions often have other co-morbidities like cardiovascular health and obesity-related metabolic disorders, these conditions will also be included. Participants will provide information from their smartphones or personal computers. The information will be used by researchers and clinicians to help patients and their providers make better, more informed decisions about treatment of chronic conditions.

We have established a governance structure with highly engaged patients and stakeholders who will serve on a Patient Governor Group (PGG) and Research Advisory Board (RAB) to ensure Patient Power participant privacy and transparency about research activities. Online tools and a mobile application at me securely capture patient data. The software tools built include real-time connection to the adaptive version of NIH Patient Reported Outcomes Measurement Information System (PROMIS) instruments capturing patient reported data that minimizes participant burden and allows participants to immediately view their scores if they choose. The Patient Power App runs on both web browsers and smartphones with data stored in the Amazon Web Services (AWS) cloud, not on a participant's smartphone or browser. The App has four key design pillars: (1) Patient engagement, community integration and education by incorporating GHLF bloggers and chronic disease news and social media engagement to the app for education, support and research findings to be shared directly and immediately with those living with registry-eligible chronic conditions; (2) Personal longitudinal health and medication tracking by providing participants' access to their actively contributed patient reported outcome (PRO) and other health-related data (e.g. current and past medications). We will use messaging to encourage participants to regularly update their information, including medication information. For example, we may remind participants to contribute their medication information with the following message: "You don't have any active medications. You can record your medications in Patient Power. By adding your active medications, you will be able to see how your symptoms have changed since starting a new medication. Click here to start entering medications". (3) Health care decision making by allowing App users to share health tracking reports at their discretion with their providers or caregivers; and (4) Research opportunities by providing a platform where an array of new research opportunities can be browsed by participants to combat chronic diseases. The combination of solid governance structure with well-developed policies and procedures, engaged patient community, collaborative relationships with many research partners and our innovatively convenient and mobile approach to data collection make Patient Power a unique and powerful patient-led initiative in chronic disease research.

Conditions

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Rheumatoid Arthritis Ankylosing Spondylitis Fibromyalgia Gout Crohn Disease Juvenile Idiopathic Arthritis Lupus Erythematosus Myositis Osteoarthritis Osteoporosis Psoriasis Psoriatic Arthritis Scleroderma Dermatomyositis Inflammatory Bowel Diseases Polymyositis Axial Spondyloarthritis Diffuse Idiopathic Skeletal Hyperostosis Polymyalgia Rheumatica Giant Cell Arteritis Temporal Arteritis Wegener Relapsing Polychondritis Undifferentiated Connective Tissue Disease Spinal Cord Injuries Alzheimer Disease Amyotrophic Lateral Sclerosis Ataxia Bell Palsy Brain Tumor Cerebral Aneurysm Epilepsy Guillain-Barre Syndrome Headache Head Injury Hydrocephalus Lumbar Disc Disease Meningitis Multiple Sclerosis Muscular Dystrophy Neurocutaneous Syndromes Parkinson Disease Stroke Cluster Headache Tension-Type Headache Chronic Obstructive Pulmonary Disease Asthma Lung Cancer Cystic Fibrosis Sleep Apnea Eczema Alopecia Chronic Inflammation Unstable Angina Heart Attack Heart Failure Arrythmia Valve Heart Disease High Blood Pressure Congenital Heart Disease Peripheral Arterial Disease Diabetes Chronic Liver Disease Obesity

Study Design

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Observational Model Type

COHORT

Study Time Perspective

PROSPECTIVE

Study Groups

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