AR-Power Patient Powered Research Network

  • STATUS
    Recruiting
  • End date
    Mar 1, 2025
  • participants needed
    9867
  • sponsor
    Global Healthy Living Foundation
Updated on 23 January 2021

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
  1. 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.
  2. To use the data from this study to improve treatment and to further advance finding a cure for rheumatic diseases.

Details
Condition Fibromyalgia, Fibromyalgia, Osteopenia, Osteopenia, Ankylosing spondylitis, Ankylosing spondylitis, Psoriasis, Psoriasis and Psoriatic Disorders, Autoimmune disease, Autoimmune disease, Osteoporosis, Osteoporosis, PSORIATIC ARTHRITIS, PSORIATIC ARTHRITIS, JUVENILE RHEUMATOID ARTHRITIS, Rheumatoid Arthritis, Rheumatoid Arthritis, Rheumatoid Arthritis (Pediatric), Scleroderma, Systemic sclerosis, Scleroderma, Myositis, Idiopathic Inflammatory Myopathies, Myositis, Inflammatory bowel disease, Inflammatory bowel disease, Crohn's Disease, Crohn's Disease, Crohn's Disease (Pediatric), Arthritis, Arthritis and Arthritic Pain, Arthritis and Arthritic Pain (Pediatric), Myofascial Pain Syndrome, Gout, Gout (Hyperuricemia), Osteoarthritis, Osteoarthritis, Arthritis and Arthritic Pain, Gout (Hyperuricemia), Psoriasis and Psoriatic Disorders, Rheumatoid Arthritis (Pediatric), Lupus Erythematosus, Arthritis and Arthritic Pain (Pediatric), Crohn's Disease (Pediatric), fibro, Idiopathic Inflammatory Myopathies, degenerative arthritis, muscle inflammation, juvenile idiopathic arthritis, crohns disease, progressive systemic sclerosis
Clinical Study IdentifierNCT03840928
SponsorGlobal Healthy Living Foundation
Last Modified on23 January 2021

Eligibility

Yes No Not Sure

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

Age < 19 years b) No self-reported physician diagnosis of musculoskeletal condition
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How to participate?

Step 1 Connect with a study center
What happens next?
  • You can expect the study team to contact you via email or phone in the next few days.
  • Sign up as volunteer  to help accelerate the development of new treatments and to get notified about similar trials.

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Additional screening procedures may be conducted by the study team before you can be confirmed eligible to participate.

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If you are confirmed eligible after full screening, you will be required to understand and sign the informed consent if you decide to enroll in the study. Once enrolled you may be asked to make scheduled visits over a period of time.

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Complete your scheduled study participation activities and then you are done. You may receive summary of study results if provided by the sponsor.

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