AR-Power Patient Powered Research Network (GHLF)
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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
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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:
- 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 |
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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 |
Observational Model: | Cohort |
Time Perspective: | Prospective |
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 |

Group/Cohort |
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Ankylosing Spondylitis |
Fibromyalgia |
Gout |
Crohn's-related Arthritis |
Juvenile Idiopathic Arthritis |
Lupus |
Myositis |
Osteoarthritis |
Osteoporosis |
Psoriasis |
Psoriatic Arthritis |
Rheumatoid Arthritis |
Scleroderma |
- 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 ]

Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the contacts provided below. For general information, Learn About Clinical Studies.
Ages Eligible for Study: | 19 Years and older (Adult, Older Adult) |
Sexes Eligible for Study: | All |
Accepts Healthy Volunteers: | Yes |
Sampling Method: | Probability Sample |
Participants will be derived from the population of people who indicate that they have been diagnosed by a physician as having musculoskeletal conditions including RA, SpA and other chronic musculoskeletal conditions. These will come from two sources:
- CreakyJoints website, an online rheumatic-disease patient support community (www.CreakyJoints.org), composed of patients with arthritis and arthritis-related disease, CreakyJoints members with self-reported musculoskeletal conditions will be invited to join the ArthritisPower research registry and download the ArthritisPower App.
- CreakyJoints Facebook and Twitter social network platforms. CreakyJoints "fans" or "followers" will be told about the ArthritisPower registry and app on the CreakyJoints Facebook page (www.Facebook.com/CreakyJoints) and/or Twitter account (https://twitter.com/creakyjoints).
Inclusion Criteria:
- 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.
- Self-report that a physician has given a diagnosis of RA, SpA, or other musculoskeletal condition.
- 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:
a) Age < 19 years b) No self-reported physician diagnosis of musculoskeletal condition.

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, PhD | bnowell@ghlf.org | ||
Contact: Laura Stradford, MPH | lstradford@ghlf.org |
United States, New York | |
Global Healthy Living Foundation | Recruiting |
Upper Nyack, New York, United States, 10960 |
Responsible Party: | Ben Nowell, Director, Patient-Centered Research, Global Healthy Living Foundation |
ClinicalTrials.gov Identifier: | NCT03840928 |
Other Study ID Numbers: |
GlobalHealthyLivingF |
First Posted: | February 15, 2019 Key Record Dates |
Last Update Posted: | February 2, 2021 |
Last Verified: | February 2021 |
Spondylitis Arthritis Osteoporosis Fibromyalgia Arthritis, Psoriatic Spondylitis, Ankylosing Arthritis, Juvenile Myositis Crohn Disease Joint Diseases Musculoskeletal Diseases Rheumatic Diseases Connective Tissue Diseases Autoimmune Diseases Immune System Diseases |
Psoriasis Skin Diseases, Papulosquamous Skin Diseases Inflammatory Bowel Diseases Gastroenteritis Gastrointestinal Diseases Digestive System Diseases Intestinal Diseases Bone Diseases, Metabolic Bone Diseases Metabolic Diseases Muscular Diseases Neuromuscular Diseases Nervous System Diseases Bone Diseases, Infectious |