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| Name | Class |
|---|---|
| University of Alabama at Birmingham | OTHER |
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.
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.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Ankylosing Spondylitis | |||
| Fibromyalgia | |||
| Gout | |||
| Crohn's-related Arthritis | |||
| Juvenile Idiopathic Arthritis | |||
| Lupus | |||
| Myositis | |||
| Osteoarthritis | |||
| Osteoporosis | |||
| Psoriasis | |||
| Psoriatic Arthritis |
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| Measure | Description | Time Frame |
|---|---|---|
| Pain Interference (PROMIS) | 7 days | |
| Fatigue (PROMIS) | 7 days | |
| Sleep Disturbance (PROMIS) | 7 days | |
| Physical Function (PROMIS) | 7 days | |
| RAPID-3 (MD-HAQ with visual analogue scale for pain and patient global measure for overall health) | 7 days |
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Inclusion Criteria:
Exclusion Criteria
• Under 19 years old
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Participants will be derived from the population of people who indicate that they have been diagnosed by a physician with a chronic condition. al conditions will be invited to join the ArthritisPower research registry and download the PatientSpot App.
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Shilpa Venkatachalam, PhD | Contact | (845) 348 0400 | 110 | bnowell@ghlf.org |
| Laura Stradford, MPH | Contact | (845) 348 0400 | 210 | lstradford@ghlf.org |
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| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Global Healthy Living Foundation | Recruiting | Upper Nyack | New York | 10960 | United States |
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| Rheumatoid Arthritis |
| Scleroderma |
| ID | Term |
|---|---|
| D001172 | Arthritis, Rheumatoid |
| D013167 | Spondylitis, Ankylosing |
| D005356 | Fibromyalgia |
| D006073 | Gout |
| D003424 | Crohn Disease |
| D001171 | Arthritis, Juvenile |
| D009220 | Myositis |
| D010003 | Osteoarthritis |
| D010024 | Osteoporosis |
| D011565 | Psoriasis |
| D015535 | Arthritis, Psoriatic |
| D045743 | Scleroderma, Diffuse |
| D003882 | Dermatomyositis |
| D015212 | Inflammatory Bowel Diseases |
| D017285 | Polymyositis |
| D000089183 | Axial Spondyloarthritis |
| D004057 | Hyperostosis, Diffuse Idiopathic Skeletal |
| D011111 | Polymyalgia Rheumatica |
| D013700 | Giant Cell Arteritis |
| D014890 | Granulomatosis with Polyangiitis |
| D011081 | Polychondritis, Relapsing |
| D000074079 | Undifferentiated Connective Tissue Diseases |
| D013119 | Spinal Cord Injuries |
| D000544 | Alzheimer Disease |
| D000690 | Amyotrophic Lateral Sclerosis |
| D001259 | Ataxia |
| D020330 | Bell Palsy |
| D001932 | Brain Neoplasms |
| D002532 | Intracranial Aneurysm |
| D004827 | Epilepsy |
| D020275 | Guillain-Barre Syndrome |
| D006261 | Headache |
| D006259 | Craniocerebral Trauma |
| D006849 | Hydrocephalus |
| C535531 | Intervertebral disc disease |
| D008581 | Meningitis |
| D009103 | Multiple Sclerosis |
| D009136 | Muscular Dystrophies |
| D020752 | Neurocutaneous Syndromes |
| D010300 | Parkinson Disease |
| D020521 | Stroke |
| D003027 | Cluster Headache |
| D018781 | Tension-Type Headache |
| D029424 | Pulmonary Disease, Chronic Obstructive |
| D001249 | Asthma |
| D008175 | Lung Neoplasms |
| D003550 | Cystic Fibrosis |
| D012891 | Sleep Apnea Syndromes |
| D004485 | Eczema |
| D000505 | Alopecia |
| D000789 | Angina, Unstable |
| D009203 | Myocardial Infarction |
| D006333 | Heart Failure |
| D001145 | Arrhythmias, Cardiac |
| D006349 | Heart Valve Diseases |
| D006973 | Hypertension |
| D006330 | Heart Defects, Congenital |
| D058729 | Peripheral Arterial Disease |
| D003920 | Diabetes Mellitus |
| D009765 | Obesity |
| ID | Term |
|---|---|
| D001168 | Arthritis |
| D007592 | Joint Diseases |
| D009140 | Musculoskeletal Diseases |
| D012216 | Rheumatic Diseases |
| D003240 | Connective Tissue Diseases |
| D017437 | Skin and Connective Tissue Diseases |
| D001327 | Autoimmune Diseases |
| D007154 | Immune System Diseases |
| D025242 | Spondylarthropathies |
| D025241 | Spondylarthritis |
| D013166 | Spondylitis |
| D013122 | Spinal Diseases |
| D001847 | Bone Diseases |
| D000844 | Ankylosis |
| D009135 | Muscular Diseases |
| D009468 | Neuromuscular Diseases |
| D009422 | Nervous System Diseases |
| D000070657 | Crystal Arthropathies |
| D011686 | Purine-Pyrimidine Metabolism, Inborn Errors |
| D008661 | Metabolism, Inborn Errors |
| D030342 | Genetic Diseases, Inborn |
| D009358 | Congenital, Hereditary, and Neonatal Diseases and Abnormalities |
| D008659 | Metabolic Diseases |
| D009750 | Nutritional and Metabolic Diseases |
| D005759 | Gastroenteritis |
| D005767 | Gastrointestinal Diseases |
| D004066 | Digestive System Diseases |
| D007410 | Intestinal Diseases |
| D001851 | Bone Diseases, Metabolic |
| D017444 | Skin Diseases, Papulosquamous |
| D012871 | Skin Diseases |
| D012595 | Scleroderma, Systemic |
| D015576 | Hyperostosis |
| D013128 | Spinal Osteophytosis |
| D020293 | Vasculitis, Central Nervous System |
| D020274 | Autoimmune Diseases of the Nervous System |
| D002561 | Cerebrovascular Disorders |
| D001927 | Brain Diseases |
| D002493 | Central Nervous System Diseases |
| D014652 | Vascular Diseases |
| D002318 | Cardiovascular Diseases |
| D001167 | Arteritis |
| D014657 | Vasculitis |
| D017445 | Skin Diseases, Vascular |
| D017563 | Lung Diseases, Interstitial |
| D008171 | Lung Diseases |
| D012140 | Respiratory Tract Diseases |
| D056648 | Anti-Neutrophil Cytoplasmic Antibody-Associated Vasculitis |
| D056647 | Systemic Vasculitis |
| D002357 | Cartilage Diseases |
| D013118 | Spinal Cord Diseases |
| D020196 | Trauma, Nervous System |
| D014947 | Wounds and Injuries |
| D003704 | Dementia |
| D024801 | Tauopathies |
| D019636 | Neurodegenerative Diseases |
| D019965 | Neurocognitive Disorders |
| D001523 | Mental Disorders |
| D016472 | Motor Neuron Disease |
| D057177 | TDP-43 Proteinopathies |
| D057165 | Proteostasis Deficiencies |
| D020820 | Dyskinesias |
| D009461 | Neurologic Manifestations |
| D012816 | Signs and Symptoms |
| D013568 | Pathological Conditions, Signs and Symptoms |
| D006566 | Herpesviridae Infections |
| D004266 | DNA Virus Infections |
| D014777 | Virus Diseases |
| D007239 | Infections |
| D009059 | Mouth Diseases |
| D009057 | Stomatognathic Diseases |
| D005155 | Facial Nerve Diseases |
| D003389 | Cranial Nerve Diseases |
| D016543 | Central Nervous System Neoplasms |
| D009423 | Nervous System Neoplasms |
| D009371 | Neoplasms by Site |
| D009369 | Neoplasms |
| D020765 | Intracranial Arterial Diseases |
| D000783 | Aneurysm |
| D011129 | Polyradiculoneuropathy |
| D003711 | Demyelinating Diseases |
| D011115 | Polyneuropathies |
| D010523 | Peripheral Nervous System Diseases |
| D000094025 | Post-Infectious Disorders |
| D002908 | Chronic Disease |
| D020969 | Disease Attributes |
| D010335 | Pathologic Processes |
| D010146 | Pain |
| D000090862 | Neuroinflammatory Diseases |
| D020278 | Demyelinating Autoimmune Diseases, CNS |
| D020966 | Muscular Disorders, Atrophic |
| D004476 | Ectodermal Dysplasia |
| D000015 | Abnormalities, Multiple |
| D000013 | Congenital Abnormalities |
| D012868 | Skin Abnormalities |
| D012873 | Skin Diseases, Genetic |
| D020734 | Parkinsonian Disorders |
| D001480 | Basal Ganglia Diseases |
| D009069 | Movement Disorders |
| D000080874 | Synucleinopathies |
| D051303 | Trigeminal Autonomic Cephalalgias |
| D051270 | Headache Disorders, Primary |
| D020773 | Headache Disorders |
| D008173 | Lung Diseases, Obstructive |
| D001982 | Bronchial Diseases |
| D012130 | Respiratory Hypersensitivity |
| D006969 | Hypersensitivity, Immediate |
| D006967 | Hypersensitivity |
| D012142 | Respiratory Tract Neoplasms |
| D013899 | Thoracic Neoplasms |
| D010182 | Pancreatic Diseases |
| D007232 | Infant, Newborn, Diseases |
| D001049 | Apnea |
| D012120 | Respiration Disorders |
| D020919 | Sleep Disorders, Intrinsic |
| D020920 | Dyssomnias |
| D012893 | Sleep Wake Disorders |
| D003872 | Dermatitis |
| D017443 | Skin Diseases, Eczematous |
| D007039 | Hypotrichosis |
| D006201 | Hair Diseases |
| D020763 | Pathological Conditions, Anatomical |
| D000787 | Angina Pectoris |
| D017202 | Myocardial Ischemia |
| D006331 | Heart Diseases |
| D002637 | Chest Pain |
| D007238 | Infarction |
| D007511 | Ischemia |
| D009336 | Necrosis |
| D018376 | Cardiovascular Abnormalities |
| D050197 | Atherosclerosis |
| D001161 | Arteriosclerosis |
| D001157 | Arterial Occlusive Diseases |
| D016491 | Peripheral Vascular Diseases |
| D044882 | Glucose Metabolism Disorders |
| D004700 | Endocrine System Diseases |
| D050177 | Overweight |
| D044343 | Overnutrition |
| D009748 | Nutrition Disorders |
| D001835 | Body Weight |
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