Our Projects


NYC-CDRN Cystic Fibrosis Research Summary

Investigator: Dr. Emily DiMango (Columbia) & Dr. Patricia Walker (Mount Sinai Beth Israel)

Purpose: Increasingly, patients are using social internet sites as a means of obtaining health information, treatment advice and support. With technology rapidly evolving, patients and families want information in a timely and easily accessible fashion. Communicating and engaging patients via social media are not only relevant but becoming a standard approach to healthcare delivery.

Goal: To determine the current use of or interest of Cystic Fibrosis (CF) patients in using social media to communicate with their healthcare team.

About the survey: The survey is made up of 34 questions about interest in and preferences related to using social media to communicate and get support as a Cystic Fibrosis patient. It will take around 15 minutes to complete the survey. It also contains questions that ask how you feel about the treatment you are receiving and your health in general. We are asking people with cystic fibrosis who have been seen for a visit at one of the New York City Clinical Data Research Network participating hospitals or clinics to participate in the survey. Learn more about the NYC-CDRN.

How to participate: If you are eligible, a survey firm may be contacting you.