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AR-Power Patient Powered Research Network (GHLF)

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ClinicalTrials.gov Identifier: NCT03840928
Recruitment Status : Recruiting
First Posted : February 15, 2019
Last Update Posted : February 15, 2019
Sponsor:
Collaborator:
University of Alabama at Birmingham
Information provided by (Responsible Party):
Ben Nowell, Global Healthy Living Foundation

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:

  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.

Condition or disease
Rheumatoid Arthritis Ankylosing Spondylitis Fibromyalgia Gout Crohn Disease Juvenile Idiopathic Arthritis Lupus Erythematosus Myositis Osteoarthritis Osteoporosis Psoriasis Psoriatic Arthritis Scleroderma

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



Primary Outcome Measures :
  1. Pain Interference (PROMIS) [ Time Frame: 7 days ]
  2. Fatigue (PROMIS) [ Time Frame: 7 days ]
  3. Sleep Disturbance (PROMIS) [ Time Frame: 7 days ]
  4. Physical Function (PROMIS) [ Time Frame: 7 days ]
  5. RAPID-3 (MD-HAQ with visual analogue scale for pain and patient global measure for overall health) [ Time Frame: 7 days ]


Information from the National Library of Medicine

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.


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Ages Eligible for Study:   19 Years and older   (Adult, Older Adult)
Sexes Eligible for Study:   All
Accepts Healthy Volunteers:   Yes
Sampling Method:   Probability Sample
Study Population

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:

  1. 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.
  2. 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).
Criteria

Inclusion Criteria:

  1. 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.
  2. Self-report that a physician has given a diagnosis of RA, SpA, or other musculoskeletal condition.
  3. 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.


Information from the National Library of Medicine

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


Contacts
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Contact: Ben Nowell, PhD bnowell@ghlf.org
Contact: Rachael Langa rlanga@ghlf.org

Locations
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United States, New York
Global Healthy Living Foundation Recruiting
Upper Nyack, New York, United States, 10960
Sponsors and Collaborators
Global Healthy Living Foundation
University of Alabama at Birmingham

Additional Information:

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Responsible Party: Ben Nowell, Director, Patient-Centered Research, Global Healthy Living Foundation
ClinicalTrials.gov Identifier: NCT03840928     History of Changes
Other Study ID Numbers: GlobalHealthyLivingF
First Posted: February 15, 2019    Key Record Dates
Last Update Posted: February 15, 2019
Last Verified: February 2019

Additional relevant MeSH terms:
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Arthritis
Osteoarthritis
Arthritis, Rheumatoid
Psoriasis
Crohn Disease
Osteoporosis
Fibromyalgia
Spondylitis
Arthritis, Psoriatic
Spondylitis, Ankylosing
Arthritis, Juvenile
Myositis
Joint Diseases
Musculoskeletal Diseases
Rheumatic Diseases
Connective Tissue Diseases
Autoimmune Diseases
Immune System Diseases
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