Cystic Fibrosis Foundation’s Community Voice is seeking input on research parameters for new enzyme replacement therapies. The following is the text of their announcement, including links to an explanation of the survey and the survey itself. The deadline for participation is Thursday, June 23, 2022.
In 2021, The CF Foundation partnered with Synspira Therapeutics, a company committed to CF research and advancing new therapies, to conduct a survey examining many aspects of Pancreatic Enzyme Replacement Therapy (PERT), commonly called “enzymes”, usage in the CF community and future clinical trial interest. Synspira is developing a new PERT that intends to simplify dosing, support long-term outcomes and is non-porcine based. The Synspira team would like to conduct another survey to hear from the CF community in the following areas:
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- Gain insights into which settings for research visits are appealing to people with CF
- Gain additional insights to design clinical studies for new PERTs
- Better understand willingness to participate in research studies for PERTs
Please click Synspira_Survey_Purpose to learn more about the purpose of this survey. Leaders of this project are interested in hearing from all adults with CF and their families who are currently taking pancreatic enzyme replacement therapies. If you would like to participate in this anonymous, 7-minute survey, please click on the button below by Thursday, June 23rd, 2022.
If you have any questions regarding this opportunity, please contact [email protected].
Thank you for your time and consideration,
Danielle Gallotto, BSN, RN
Manager, Clinical Operations
Synspira Therapeutics, Inc.