AR-Power Patient Powered Research Network (GHLF)
|The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government. Know the risks and potential benefits of clinical studies and talk to your health care provider before participating. Read our disclaimer for details.|
|ClinicalTrials.gov Identifier: NCT03840928|
Recruitment Status : Recruiting
First Posted : February 15, 2019
Last Update Posted : February 2, 2021
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.
- 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.
- To use the data from this study to improve treatment and to further advance finding a cure for rheumatic diseases.
|Condition or disease|
|Rheumatoid Arthritis Ankylosing Spondylitis Fibromyalgia Gout Crohn Disease Juvenile Idiopathic Arthritis Lupus Erythematosus Myositis Osteoarthritis Osteoporosis Psoriasis Psoriatic Arthritis Scleroderma|
|Study Type :||Observational [Patient Registry]|
|Estimated Enrollment :||9867 participants|
|Target Follow-Up Duration:||5 Years|
|Actual Study Start Date :||April 1, 2015|
|Estimated Primary Completion Date :||March 1, 2025|
|Estimated Study Completion Date :||March 1, 2025|
|Juvenile Idiopathic Arthritis|
- Pain Interference (PROMIS) [ Time Frame: 7 days ]
- Fatigue (PROMIS) [ Time Frame: 7 days ]
- Sleep Disturbance (PROMIS) [ Time Frame: 7 days ]
- Physical Function (PROMIS) [ Time Frame: 7 days ]
- RAPID-3 (MD-HAQ with visual analogue scale for pain and patient global measure for overall health) [ Time Frame: 7 days ]
To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.
Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT03840928
|Contact: Ben Nowell, PhDemail@example.com|
|Contact: Laura Stradford, MPHfirstname.lastname@example.org|
|United States, New York|
|Global Healthy Living Foundation||Recruiting|
|Upper Nyack, New York, United States, 10960|