Cystic Fibrosis Reproductive and Sexual Health Collaborative: Building Online Research Partnerships
Status unconfirmed
Conditions studied: Cystic Fibrosis, Patient Engagement
In brief
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.
Key facts
- Study ID
- NCT04999865
- Run by
- University of Washington
- People needed
- 100
- Starts
- 2019-04-19
- Expected to finish
- 2021-12-31
- Last updated by the study team
- 2021-08-19
Who can join
Age: any. Sex: any. Healthy volunteers: not accepted.
You may qualify if…
- Any interested adult CF patients, CF caregivers, researchers or healthcare providers can be included in the online patient-engagement training program. Any interested patients/community members and researchers/providers involved in patient-centered outcomes reserach teams that engage online can be included for the online platform interviews.
You may not qualify if…
- Persons less than 18 years of age
Where it is running
- University of Washington — Seattle, Washington, United States
Full record on ClinicalTrials.gov
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