Cystic Fibrosis Reproductive & Sexual Health Collaborative: Building

Status Active, not recruiting

Clinical Trial Summary

This is a Patient-Centered Outcomes Research Institute engagement effort aimed at training researchers/providers and patients to work in research teams together online throughout the research process (including: development, design, and dissemination) to address critical gaps in their care. This is a change from the typical research done with people with CF as they are frequently isolated from other members of the CF community because of infection control guidelines that restrict in-person contact to avoid the spread of bacteria between patients. This project has four aims: 1. build capacity for PCOR knowledge and skills applicable for longitudinal online engagement, 2. create and disseminate a best practices PCOR user guide for populations that solely engage online, 3. to create an interactive web-based version of our User Guide through a survey and three modified Delphi rounds, and 4. to create a comprehensive training manual for conducting PCOR online (step-by-step instructions), which will incorporate the aforementioned user guide.

Clinical Trial Description

The CF Reproductive and Sexual Health Collaborative (CFReSHC) will introduce and support patient-centered outcomes research (PCOR) to the greater CF community using existing PCOR training products and adapt them so that they address key issues related to researcher-patient teams that solely engage online. We will create a best-practices user guide for online engagement by performing key-informant interviews with patient- or community-engaged teams and periodic assessments of day-to-day platform use with CFReSHC members and other PCOR teams. This project has four aims: 1. build capacity for PCOR knowledge and skills applicable for longitudinal online engagement, 2. create and disseminate a best practices PCOR user guide for populations that solely engage online, 3. to create an interactive web-based version of our User Guide through a survey and three modified Delphi rounds, and 4. to create a comprehensive training manual for conducting PCOR online (step-by-step instructions), which will incorporate the aforementioned user guide. ;

Study Design

Related Conditions & MeSH terms

Clinical Trial Details

NCT number	NCT04999865
Study type	Observational
Source	University of Washington
Contact
Status	Active, not recruiting
Phase
Start date	April 19, 2019
Completion date	December 31, 2021

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See also
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Clinical trials are conducted in a series of steps, called phases - each phase is designed to answer a separate research question.

Phase 1: Researchers test a new drug or treatment in a small group of people for the first time to evaluate its safety, determine a safe dosage range, and identify side effects.
Phase 2: The drug or treatment is given to a larger group of people to see if it is effective and to further evaluate its safety.
Phase 3: The drug or treatment is given to large groups of people to confirm its effectiveness, monitor side effects, compare it to commonly used treatments, and collect information that will allow the drug or treatment to be used safely.
Phase 4: Studies are done after the drug or treatment has been marketed to gather information on the drug's effect in various populations and any side effects associated with long-term use.

Cystic Fibrosis Reproductive and Sexual Health Collaborative: Building Online Research Partnerships

Clinical Trial Summary

Clinical Trial Description

Study Design

Related Conditions & MeSH terms