The following is a Patient-centered Outcomes Research needs assessment survey for Cystic Fibrosis researchers, clinicians, patients and caregivers. Our goal is to better understand your knowledge and experience with patient-engaged research (or PCOR) and determine training topics most important to you. This survey is being conducted by the Cystic Fibrosis Reproductive and Sexual Health Collaborative (CFReSHC) which is an innovative collaborative that engages CF patients as key members of the research team. CFReSHC received funding from the Patient-Centered Outcomes Research Institute (PCORI) to expand our patient-engaged methods to the greater CF community. Your input about PCOR training is very important to us.

Your participation in this survey is voluntary. You may refuse to participate and you are free to stop taking the survey at any time without penalty or loss of benefits to which you are otherwise entitled.

If you have questions about the survey, please contact Dr. Emily Godfrey at (206) 685-4895. If you have questions about your rights as a research subject, please contact the University of Washington Human Subjects Division at (206) 543-0098.

As you respond to the questions below, please keep the following statements in mind:

Patient engagement: meaningful involvement of patients, caregivers, clinicians, and other healthcare stakeholders as equal members throughout the research process - from topic selection through design and conduct of research to dissemination of results.

Patient-centered outcomes research: studies questions and outcomes that are meaningful and important to patients and caregivers.

Patient-engaged research: patients are equal partners with researchers and health care providers in the research process.

Comparative clinical effectiveness research (CER): compares the effectiveness of two or more interventions or approaches to health care, examining their risks and benefits. CER findings can both validate a particular intervention and identify which treatments best meet a certain population's needs.

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