Cystic Fibrosis Foundation, through their Community Voice program, has announced a survey relating to pain management. Here is the text of the announcement:
Researchers at Johns Hopkins University are interested in learning about how people with cystic fibrosis currently manage pain and ways they would like their pain to be managed. They are seeking feedback from people with CF, ages 14 and above. If this does not describe you, but you know someone who falls in this category, please share this email with them!
Please read below for more information about the project or click here to take the survey. Because this survey is being done through an academic institution the turn around time for results may be a little bit longer than other Community Voice projects.
Please email firstname.lastname@example.org with any questions or concerns.
The Community Voice Team
The following supplemental information was provided by the research team:
RESEARCH STUDY: The Use and Effectiveness of Pain Relief in Cystic Fibrosis
IRB00149773; Principle Investigator: Noah Lechtzin
We are interested in learning about ways people with cystic fibrosis manage pain and how they would like their pain managed. Please complete the survey to tell us about your experiences with pain and pain relief. We need feedback from patients aged 14 and over with all stages of CF. We welcome your input!If you have a child or loved one aged 14 and older with CF, please forward them this information.
The survey should 10 – 15 minutes to complete. This survey is being conducted by researchers at Johns Hopkins University. Your responses are very much appreciated and are completely confidential. We are excited to use this information to help us get a better understanding of pain in those with CF!
For more information, please contact: Sarah Allgood, RN, PhD at email@example.com or 410-614-4411.
Thank you in advance.
Noah Lechtzin, MD, MPH
Associate Professor of Medicine and Epidemiology
Sarah Allgood, RN, PhD
Individuals living with CF aged 14 or older are eligible to take the survey. Here is the link to the survey: https://jhmi.co1.qualtrics.com/jfe/form/SV_0xqS2FnxRn3Ig2F