A New Model for Patient Engagement for Cystic Fibrosis Patients and Caregivers
Our blog appears in the DIA global forum. It has the results of our initial survey (which took place from 2017-2018) where 1200 of you responded, both patients and caregivers. CFTechnology.org, a non-profit, global online community of over 18,000 cystic fibrosis (CF) patients and caregivers, has launched a study to …
Your Cystic Fibrosis Data is Valuable! Watch the Video…Take the Survey!
We hope you agree! Tell us what you think..Be Counted! Take the SURVEY NOW! Video by Lance 2020 ~ 1 minute Survey: 9 minutes
Thank YOU! This research is complete!
All of the goals were met in 20 hours! This community loves to be part of research. Thank you! Research Opportunities! $40.00 Gift Card to Complete On-Line Research This research opportunity involved 5-17 year old on Pulmozyme. It was for both patients and caregivers.
Survey Shows A Lot of People Save Leftover Painkillers
More than half of patients who get a prescription for opioid painkillers have leftover pills and keep them to use later, a practice that could potentially exacerbate the United States’ epidemic of painkiller addiction and overdoses. Researchers reporting in JAMA Internal Medicine also found that nearly half of those surveyed …
Survey Filled – Thank you!
Dear CF Community Members, This survey is FILLED. Thank you for your interest and/or participation. Please email [email protected] if you would like to be considered for future projects. Thank You! As a valued member of the cystic fibrosis community, we are inviting teens to make their voices heard in …
Survey of Cystic Fibrosis Patients by GeneFo
As reported on the website Cystic Fibrosis News Today,GeneFo, the online platform for organizing different chronic disease communities, surveyed 2,400 people with Cystic Fibrosis. The questions they asked included: How are you feeling today? Depressed (39%) and Tired (34%) were top answers. What is your preferred calorie booster? Meat (37%) …
Financial: Your Questions from the 2015 Survey
Your Financial Questions From Our Survey in April 2015 How can you lower our out of pocket expenses in medications? Where else can we find financial help for the high cost of copays? Where can I get help with expenses? The high cost of medicines and machines need to …
Your Questions on Nutraceuticals
From our Survey in 2015 Qualitative Research: YOUR Questions What are some natural treatments that are safe and effective to enhance regular treatments? Who will work with CF patients regarding natural remedies such as essential oils? What foods, natural remedies, or supplements have most helped patients slow the progression …
Cystic Fibrosis Resource and Information Needs Survey
Written by Melissa75 and Imogene In the Spring of 2015, we surveyed the CF community on resource and information needs. 478 people responded, answering questions about the resources for CF care they most believe could improve their CF care, and what topics they’re most interested in learning about. We’d like …