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

NCT04999865 · Status: UNKNOWN · Type: OBSERVATIONAL · Enrollment: 100

Last updated 2021-08-19

No results posted yet for this study

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.

Conditions

Interventions

OTHER

4-part educational program to build patient-engagement methodology capacity

We created four online training sessions. Our first training for patients/caregivers only (Research 101) was an exception, however, in which we produced a 25-minute asynchronous, self-directed learning seminar intended to be viewed before the subsequent interactive PCOR sessions. Of the three following synchronous interactive training sessions, two included both learner working groups (patients/caregivers and researchers/providers) together (PCOR 101 and PCOR Team Dynamics) and one session (PCOR Study Design) was for researchers/healthcare providers only.

Sponsors & Collaborators

Principal Investigators

  • Emily M Godfrey, MD, MPH · University of Washington

Eligibility

Sex
Healthy Volunteers
No

Timeline & Regulatory

Start
2019-04-19
Primary Completion
2020-08-15
Completion
2021-12-31

Countries

  • United States

Study Locations

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Diseases
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Read the full study record

This page highlights key information. For complete eligibility criteria, study locations, investigator contacts, and the full protocol, visit the original record on ClinicalTrials.gov.

View NCT04999865 on ClinicalTrials.gov