I am very fortunate and excited to be working with a Tech company who's goal it is to design the next generation of IPF related studies and clinical trials. What really excites me is that this company is asking all the right questions, and is reaching out to patients and caregivers for guidance and help in this endeavor.
We are still in the very early stages of this process, and I will keep you updated as we go.
One issue that is part of pretty much every clinical trial involving Idiopathic Pulmonary Fibrosis (IPF), is lung function. To make studies and trials more accessible to more folk living with IPF, researchers are testing the use of home spirometers. I am beta testing two different Bluetooth enabled devices at the moment and I'll post my thoughts on those when done.
One question that I keep seeing popping up on Twitter and in various research proposals is just how often will folks be willing to perform Pulmonary Function Testing (PFT) via a sprirometer.
I very vividly remember how hard it was to do a full effort PFT for my doctors. To be a useful tool, all PFT's pretty much have to be full effort. It is different now that I have had my transplant, blowing into the tube is much easier and I'm more used to it. My team asks that we do our tests twice per day. I would never have been able to do that in my mid to later stages of IPF.
So my question to you is, how often would you be willing to do a PFT for research? Some doctors are recommending daily. Would you join a trial that required daily PFT's? Would you join a trial that required at home PFT's at all?
This poll will be open for three weeks. Please spread the word, the more people who vote in the poll, the more data I will be able to share with researchers who are interested in this data.
Thanks in advance for your help.
Edit: I tried several times to get the poll widget to work in the post, but wasn't able to. The poll is located at the top right hand sidebar. Thanks again for your help.