CFF Community Voice recently distributed the following three announcements seeking participation in surveys. Please note the deadlines for participation.
Complementary and alternative medicines in CF care
Respond by: Wednesday, April 3, 2019 at 11:59 p.m., ET
A team from the University of Arizona is conducting a survey about perspectives regarding complementary and alternative medicines (CAM) in CF care. They want to hear from the CF community – adults with CF and ALL caregivers of persons with CF (including but not limited to, parents, spouses/partners, other family members).
To learn more about the survey and participate, please click the link below by Wednesday, April 3, 2019 at 11:59 p.m., ET. Upon completing the survey, participants will have the option to enter a raffle for an Amazon gift card.
https://uarizona.co1.qualtrics.com/jfe/form/SV_aWP9DHESpx4BK7z
Please note the Cystic Fibrosis Foundation is not involved in this project. For additional information or questions please contact the Principal Investigator, Hannah Phan, PharmD, at [email protected].
Thank you for your time and consideration! Warmest regards from the project team at the University of Arizona: Melanie Lam, PharmD; Stephanie Bradshaw, MS, RD; Kalia Anderson, PharmD Candidate; Kelly Jackson, MS, RD
Respiratory Equipment Access
Respond by: Monday, April 8th, 2019 at 11:59 p.m., ET
The CF Foundation has recognized that significant barriers exist for patients to get nebulizer compressors that are sturdy enough to handle the inhaled medicines that are needed for CF care. It has also been reported that problems exist with getting enough nebulizer cups. A team has been formed that is working to identify and address these challenges. Please consider taking the time to answer the survey below. Your answers will help to show what people living with CF experience with this type of respiratory equipment.
If you are interested in participating in the survey, please click on the link below and complete the survey by Monday, April 8th, 2019 at 11:59 p.m., ET.
https://www.surveymonkey.com/r/ZNBQNDW
Please feel free to share this opportunity with others who might be interested in participating. If you have any questions, don’t hesitate to contact us at [email protected].
CF care
Respond by: Tuesday, April 9 at 11:59 p.m., ET
The CF Foundation would like to understand what you do to manage your CF in order to live your life. We are looking for specific examples to inform how we talk about CF care so that it looks more like your lived experience. We are looking for responses to the following statement:
I take my (X treatment/activity) so that I can (X life activity).
- I take my modulator so that I can come to work every day.
- I use a feeding tube so that I have enough energy to play football at my high school.
- I wear a mask so that I can ride the subway during flu season.
Please take this short, one question survey to share what motivates you to manage your CF care by Tuesday, April 9 at 11:59 p.m., ET. To complete the survey, please fill in a treatment you take that helps you complete a specific life activity. To start, click the link below.
https://www.surveymonkey.com/r/HXKQLB6
If you have any questions, please contact [email protected].