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Updated Opportunity to Provide Input

Adults living with CF who are served by the Rochester CF Center still have an opportunity to provide input regarding their interaction with the Center. Here is the announcement from the URMC Department of Public Health Sciences:

The Department of Public Health Sciences at the University of Rochester Medical Center is currently recruiting adults with cystic fibrosis to learn about their experiences with getting health care in the Greater Rochester and Finger Lakes region.

The aim of this project is to talk with and learn from individuals affected by cystic fibrosis, using individual interviews and focus groups. All participants must be over the age of 18 and must be able to read and write English.

Interviews will take place over the phone and last no more than 45 minutes. Focus groups will last approximately 2 hours and will involve discussion with other participants regarding shared health care experiences.

If you participate, you will be compensated. Any information you provide is strictly confidential. Our report will only include summary information. Your contact information will not be shared.

This project is made possible by a grant from the Greater Rochester Health Foundation. At the conclusion of this project, findings will be summarized to inform future funding. We are hoping to be able to share a summary with participants and stakeholders in the community.

For more information about participating, please contact (585) 746-6952 or

You will find a quick summary of the project in the GRHF Project Flier. Feel free to share with your friends and acquaintances in the CF community.

The project team began conducting interviews and focus groups in June. Given the response to the request for participation, the project has been extended into the fall. The project team is also accepting applications from spouses and caregivers of CF adults where the individual is fully engaged with the CF providers or where the adult’s health precludes involvement.

Don’t hesitate. Participate!

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