Clinical Trial Details
— Status: Recruiting
Administrative data
| NCT number |
NCT03840928 |
| Other study ID # |
GlobalHealthyLivingF |
| Secondary ID |
|
| Status |
Recruiting |
| Phase |
|
| First received |
|
| Last updated |
|
| Start date |
April 1, 2015 |
| Est. completion date |
March 1, 2025 |
Study information
| Verified date |
December 2023 |
| Source |
Global Healthy Living Foundation |
| Contact |
Shilpa Venkatachalam, PhD |
| Phone |
(845) 348 0400 |
| Email |
bnowell[@]ghlf.org |
| Is FDA regulated |
No |
| Health authority |
|
| Study type |
Observational [Patient Registry]
|
Clinical Trial Summary
Patient Power 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), other musculoskeletal conditions, chronic neurological conditions like migraine,
chronic pulmonary conditions like Chronic Obstructive Pulmonary Disease (COPD), asthma,
autoimmune dermatological conditions such as psoriasis, and other chronic inflammatory or
immune-mediated conditions. In addition, since patients with chronic conditions often have
other co-morbidities like cardiovascular health and obesity-related metabolic disorders,
these conditions will also be included. Participants will provide information from their
smartphones or personal computers. The information will be used by researchers and clinicians
to help patients and their providers make better, more informed decisions about treatment of
chronic conditions.
Description:
Patient Power 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), other musculoskeletal conditions, chronic neurological conditions like migraine,
chronic pulmonary conditions like Chronic Obstructive Pulmonary Disease (COPD), asthma,
autoimmune dermatological conditions such as psoriasis, and other chronic inflammatory or
immune-mediated conditions. In addition, since patients with chronic conditions often have
other co-morbidities like cardiovascular health and obesity-related metabolic disorders,
these conditions will also be included. Participants will provide information from their
smartphones or personal computers. The information will be used by researchers and clinicians
to help patients and their providers make better, more informed decisions about treatment of
chronic conditions.
We have established a governance structure with highly engaged patients and stakeholders who
will serve on a Patient Governor Group (PGG) and Research Advisory Board (RAB) to ensure
Patient Power participant privacy and transparency about research activities. Online tools
and a mobile application at me securely capture patient data. The software tools built
include real-time connection to the adaptive version of NIH Patient Reported Outcomes
Measurement Information System (PROMIS) instruments capturing patient reported data that
minimizes participant burden and allows participants to immediately view their scores if they
choose. The Patient Power App runs on both web browsers and smartphones with data stored in
the Amazon Web Services (AWS) cloud, not on a participant's smartphone or browser. The App
has four key design pillars: (1) Patient engagement, community integration and education by
incorporating GHLF bloggers and chronic disease news and social media engagement to the app
for education, support and research findings to be shared directly and immediately with those
living with registry-eligible chronic conditions; (2) Personal longitudinal health and
medication tracking by providing participants' access to their actively contributed patient
reported outcome (PRO) and other health-related data (e.g. current and past medications). We
will use messaging to encourage participants to regularly update their information, including
medication information. For example, we may remind participants to contribute their
medication information with the following message: "You don't have any active medications.
You can record your medications in Patient Power. By adding your active medications, you will
be able to see how your symptoms have changed since starting a new medication. Click here to
start entering medications". (3) Health care decision making by allowing App users to share
health tracking reports at their discretion with their providers or caregivers; and (4)
Research opportunities by providing a platform where an array of new research opportunities
can be browsed by participants to combat chronic diseases. The combination of solid
governance structure with well-developed policies and procedures, engaged patient community,
collaborative relationships with many research partners and our innovatively convenient and
mobile approach to data collection make Patient Power a unique and powerful patient-led
initiative in chronic disease research.
