PatientSpot Formerly Known as ArthritisPower

NCT03840928 | Unknown

• 1 other identifier: GlobalHealthyLivingF
• Study Type: observational
• Target: 40,000
• Locations: 1 country
• Sites: 1

Brief Summary

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.

Conditions

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

Outcome Measures

Primary Outcomes (5)

• 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

Study Arms (13)

Ankylosing Spondylitis

Fibromyalgia

Gout

Crohn's-related Arthritis

Juvenile Idiopathic Arthritis

Lupus

Myositis

Osteoarthritis

Osteoporosis

Psoriasis

Psoriatic Arthritis

Rheumatoid Arthritis

Scleroderma

Eligibility Criteria

• Age: 19 Years+
• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Adult (18-64), Older Adult (65+)
• Sampling Method: Probability Sample

Study Population

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.

You may qualify if:

• Self-report that a physician has given a diagnosis of a chronic condition listed in the registry.
• The Registry is only intended at this time for residents of the United States and United States territories and Canada who are nineteen (19) years or older (for Puerto Rico residents, you must be 21 years or older to participate).

You may not qualify if:

• Under 19 years old

Sponsors & Collaborators

• Global Healthy Living Foundation: lead
• University of Alabama at Birmingham: collaborator

Study Sites (1)

Global Healthy Living Foundation

Upper Nyack, New York, 10960, United States

RECRUITING

MeSH Terms

Conditions

Arthritis, Rheumatoid; Spondylitis, Ankylosing; Fibromyalgia; Gout; Crohn Disease; Arthritis, Juvenile; Myositis; Osteoarthritis; Osteoporosis; Psoriasis; Arthritis, Psoriatic; Scleroderma, Diffuse; Dermatomyositis; Inflammatory Bowel Diseases; Polymyositis; Axial Spondyloarthritis; Hyperostosis, Diffuse Idiopathic Skeletal; Polymyalgia Rheumatica; Giant Cell Arteritis; Granulomatosis with Polyangiitis; Polychondritis, Relapsing; Undifferentiated Connective Tissue Diseases; Spinal Cord Injuries; Alzheimer Disease; Amyotrophic Lateral Sclerosis; Ataxia; Bell Palsy; Brain Neoplasms; Intracranial Aneurysm; Epilepsy; Guillain-Barre Syndrome; Headache; Craniocerebral Trauma; Hydrocephalus; Intervertebral disc disease; Meningitis; Multiple Sclerosis; Muscular Dystrophies; Neurocutaneous Syndromes; Parkinson Disease; Stroke; Cluster Headache; Tension-Type Headache; Pulmonary Disease, Chronic Obstructive; Asthma; Lung Neoplasms; Cystic Fibrosis; Sleep Apnea Syndromes; Eczema; Alopecia; Angina, Unstable; Myocardial Infarction; Heart Failure; Arrhythmias, Cardiac; Heart Valve Diseases; Hypertension; Heart Defects, Congenital; Peripheral Arterial Disease; Diabetes Mellitus; Obesity

Condition Hierarchy (Ancestors)

Arthritis; Joint Diseases; Musculoskeletal Diseases; Rheumatic Diseases; Connective Tissue Diseases; Skin and Connective Tissue Diseases; Autoimmune Diseases; Immune System Diseases; Spondylarthropathies; Spondylarthritis; Spondylitis; Spinal Diseases; Bone Diseases; Ankylosis; Muscular Diseases; Neuromuscular Diseases; Nervous System Diseases; Crystal Arthropathies; Purine-Pyrimidine Metabolism, Inborn Errors; Metabolism, Inborn Errors; Genetic Diseases, Inborn; Congenital, Hereditary, and Neonatal Diseases and Abnormalities; Metabolic Diseases; Nutritional and Metabolic Diseases; Gastroenteritis; Gastrointestinal Diseases; Digestive System Diseases; Intestinal Diseases; Bone Diseases, Metabolic; Skin Diseases, Papulosquamous; Skin Diseases; Scleroderma, Systemic; Hyperostosis; Spinal Osteophytosis; Vasculitis, Central Nervous System; Autoimmune Diseases of the Nervous System; Cerebrovascular Disorders; Brain Diseases; Central Nervous System Diseases; Vascular Diseases; Cardiovascular Diseases; Arteritis; Vasculitis; Skin Diseases, Vascular; Lung Diseases, Interstitial; Lung Diseases; Respiratory Tract Diseases; Anti-Neutrophil Cytoplasmic Antibody-Associated Vasculitis; Systemic Vasculitis; Cartilage Diseases; Spinal Cord Diseases; Trauma, Nervous System; Wounds and Injuries; Dementia; Tauopathies; Neurodegenerative Diseases; Neurocognitive Disorders; Mental Disorders; Motor Neuron Disease; TDP-43 Proteinopathies; Proteostasis Deficiencies; Dyskinesias; Neurologic Manifestations; Signs and Symptoms; Pathological Conditions, Signs and Symptoms; Herpesviridae Infections; DNA Virus Infections; Virus Diseases; Infections; Mouth Diseases; Stomatognathic Diseases; Facial Nerve Diseases; Cranial Nerve Diseases; Central Nervous System Neoplasms; Nervous System Neoplasms; Neoplasms by Site; Neoplasms; Intracranial Arterial Diseases; Aneurysm; Polyradiculoneuropathy; Demyelinating Diseases; Polyneuropathies; Peripheral Nervous System Diseases; Post-Infectious Disorders; Chronic Disease; Disease Attributes; Pathologic Processes; Pain; Neuroinflammatory Diseases; Demyelinating Autoimmune Diseases, CNS; Muscular Disorders, Atrophic; Ectodermal Dysplasia; Abnormalities, Multiple; Congenital Abnormalities; Skin Abnormalities; Skin Diseases, Genetic; Parkinsonian Disorders; Basal Ganglia Diseases; Movement Disorders; Synucleinopathies; Trigeminal Autonomic Cephalalgias; Headache Disorders, Primary; Headache Disorders; Lung Diseases, Obstructive; Bronchial Diseases; Respiratory Hypersensitivity; Hypersensitivity, Immediate; Hypersensitivity; Respiratory Tract Neoplasms; Thoracic Neoplasms; Pancreatic Diseases; Infant, Newborn, Diseases; Apnea; Respiration Disorders; Sleep Disorders, Intrinsic; Dyssomnias; Sleep Wake Disorders; Dermatitis; Skin Diseases, Eczematous; Hypotrichosis; Hair Diseases; Pathological Conditions, Anatomical; Angina Pectoris; Myocardial Ischemia; Heart Diseases; Chest Pain; Infarction; Ischemia; Necrosis; Cardiovascular Abnormalities; Atherosclerosis; Arteriosclerosis; Arterial Occlusive Diseases; Peripheral Vascular Diseases; Glucose Metabolism Disorders; Endocrine System Diseases; Overweight; Overnutrition; Nutrition Disorders; Body Weight

Central Study Contacts

Shilpa Venkatachalam, PhD

CONTACT

(845) 348 0400; bnowell@ghlf.org

Laura Stradford, MPH

CONTACT

(845) 348 0400; lstradford@ghlf.org

Study Design

• Study Type: observational
• Observational Model: COHORT
• Time Perspective: PROSPECTIVE
• Target Duration: 5 Years
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Director, Patient-Centered Research Operations and Ethical Oversight

Study Record Dates

• First Submitted: February 12, 2019
• First Posted: February 15, 2019
• Study Start: April 1, 2015
• Primary Completion: March 1, 2025
• Study Completion: March 1, 2025
• Last Updated: December 13, 2023

Record last verified: 2023-12

Locations

US (1)