GHLF: AR-Power Patient Powered Research Network

Sponsor

Global Healthy Living Foundation (Other)

Overall Status

Recruiting

CT.gov ID

NCT03840928

Collaborator

University of Alabama at Birmingham (Other)

9,867

Enrollment

Location

119

Anticipated Duration (Months)

82.9

Patients Per Site Per Month

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:

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	Intervention/Treatment	Phase
Rheumatoid Arthritis Ankylosing Spondylitis Fibromyalgia Gout Crohn Disease Juvenile Idiopathic Arthritis Lupus Erythematosus Myositis Osteoarthritis Osteoporosis Psoriasis Psoriatic Arthritis Scleroderma

Study Design

Study Type:

Observational [Patient Registry]

Anticipated Enrollment :

9867 participants

Observational Model:

Cohort

Time Perspective:

Prospective

Actual Study Start Date :

Apr 1, 2015

Anticipated Primary Completion Date :

Mar 1, 2025

Anticipated Study Completion Date :

Mar 1, 2025

Arms and Interventions

Arm	Intervention/Treatment
Ankylosing Spondylitis
Fibromyalgia
Gout
Crohn's-related Arthritis
Juvenile Idiopathic Arthritis
Lupus
Myositis
Osteoarthritis
Osteoporosis
Psoriasis
Psoriatic Arthritis
Rheumatoid Arthritis
Scleroderma

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

Ages Eligible for Study:

19 Years and Older

Sexes Eligible for Study:

All

Accepts Healthy Volunteers:

Yes

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).