GHLF: AR-Power Patient Powered Research Network
Study Details
Study Description
Brief Summary
ArthritisPower 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), and other musculoskeletal conditions. Participants will provide information from their smartphones or personal computers. The information will be used by researchers to help patients and their providers make better, more informed decisions about treatment of RA/SpA and other musculoskeletal conditions. ArthritisPower is part of a larger national research network called PCORnet whose 33 network members have mapped their data to a common data model. Network members will be able to submit queries through PCORnet in order to answer a range of comparative effectiveness research questions. Data sharing across PCORnet will be accomplished using secure methods to prevent patient identification. There is no cost to participants for participating and no compensation is provided.
Objectives:
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To establish a research registry to enable comparative effectiveness research in rheumatic diseases and other musculoskeletal conditions. All data collected using the ArthritisPower mobile app as part of a subject's use is stored with the ArthritisPower registry. This data will be used in conjunction with existing and future research studies.
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To use the data from this study to improve treatment and to further advance finding a cure for rheumatic diseases.
Condition or Disease | Intervention/Treatment | Phase |
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Study Design
Arms and Interventions
Arm | Intervention/Treatment |
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Ankylosing Spondylitis
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Fibromyalgia
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Gout
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Crohn's-related Arthritis
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Juvenile Idiopathic Arthritis
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Lupus
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Myositis
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Osteoarthritis
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Osteoporosis
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Psoriasis
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Psoriatic Arthritis
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Rheumatoid Arthritis
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Scleroderma
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Outcome Measures
Primary Outcome Measures
- 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]
Eligibility Criteria
Criteria
Inclusion Criteria:
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Age 19 and above. We will only allow Puerto Rican residents to join if they are 21 or older. We will add conditional logic in the registration to ensure that Puerto Ricans under the age of 21 cannot complete the registration and participate in ArthritisPower.
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Self-report that a physician has given a diagnosis of RA, SpA, or other musculoskeletal condition.
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The Registry is only intended at this time for residents of the United States and United States territories who are nineteen (19) years or older (for Puerto Rico residents, you must be 21 years or older to participate).
Exclusion Criteria:
- Age < 19 years b) No self-reported physician diagnosis of musculoskeletal condition.
Contacts and Locations
Locations
Site | City | State | Country | Postal Code | |
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1 | Global Healthy Living Foundation | Upper Nyack | New York | United States | 10960 |
Sponsors and Collaborators
- Global Healthy Living Foundation
- University of Alabama at Birmingham
Investigators
None specified.Study Documents (Full-Text)
None provided.More Information
Publications
None provided.- GlobalHealthyLivingF