February 20, 2019 at 8:43 am #16899
Recently in a conversation with another staff member at BioNews Services (the company who owns and runs Pulmonary Fibrosis News and our forums), a resource was shared with me that I didn’t know existed online. Since I don’t live in the US, I thought that many of the clinical trials shared on the following site wouldn’t apply or necessarily be directly impactful for me at this stage in the research. However, to my surprise the Clinical Trials.gov site is about private and publicly funded clinical trials happening throughout the world.
Were you aware of this resource?
Even more surprising, I found a couple of studies taking place that are currently recruiting for participants. Since I am committed to doing whatever I can to aid research and drug trials for idiopathic pulmonary fibrosis (IPF); I am going to contact the researchers and see if I would be an appropriate candidate to participate in their study.
There is also a lot of informative studies on there that have already been completed, which I look forward to reading. In particular, I see one listed compared 3 different portable oxygen concentrators (POC) during the 6-minute walk test. I wish I would have seen this before settling on the POC I chose! Needless to say, this is an informative website that might be of interest to check out.
Are there any studies listed that you’re particularly interested in reading about as a patient with IPF/PF, and why?
February 21, 2019 at 1:46 pm #16943Michael LamkinParticipant
I hope all is well with you!
I checked both Bio News and Pulmonary News links but didn’t see anything related to clinical trials being offered. I did see something regarding clinical trials but nothing about anything being offered. Am I just not looking in the right places?
February 21, 2019 at 8:06 pm #16953
Hi Mike, @michael-lamkin,
Nice to hear from you, thanks for writing. I hope everything is going well with you 🙂
I actually hyperlinked an external site to clinical trials, as it isn’t on the BioNews or the Pulmonary Fibrosis News homepage. Sorry, I should have made that more clear! Here is the link for you to copy into a URL which will take you to the clinical trials homepage, a National site: https://clinicaltrials.gov/ .. then you just type in IPF as the disease you’re looking for trials pertaining to. Hope this helps!
February 24, 2019 at 1:20 am #17036Rose M.Participant
I found an article on FB from one of the PF sites. I followed through with it and found UCLA (2 hours from me) has a study(studies?) going on. When I called, the woman was very helpful. She said that I should have a visit to the ILD clinic at UCLA before going into a study. I have to bring all my latest images on cd, as well as written reports, and all the notes from my pulmonary doc for the last 2 years. I was going to do this last fall, however I had to make 2 trips to the NY/NJ area for family illnesses so it never happened. I’m in the process now of getting things together and hope to get to UCLA in 4-8 weeks.
I’ll let you know what happens!
February 24, 2019 at 4:32 pm #17063
Thanks so much for letting us know about this and your involvement with the ILD clinics at UCLA! Sorry for all the questions in my previous reply to you, I hadn’t made it to this note of yours yet so now I understand why you’re going to the clinics at UCLA. As a fellow patient with IPF, I am very thankful for your willingness to do this and potentially participate in studies after being examined in the clinic. We’re all in this together and even participating in studies will help each other, so I do hope the clinic appointment goes well.
Yes, if you wouldn’t mind, please circle back as I’d love to hear how the ILD clinic goes and which studies they suggest you might participate in and why 🙂 Thanks again for sharing and goodluck!
February 24, 2019 at 12:02 pm #17043Jean-Michel FourrierParticipant
@charlene-marshall thank you Charlene, so interesting, even if not easy to understand everything in detail. I was not aware of this resource.
I succeded to find the clinical trial I already participated just after my diagnosis in 2017 … Clinical trial completed june 2018, no results posted yet.
I will take more time in the coming weeks to look at it in detail because I find important to contribute to research as much as I can.
February 24, 2019 at 4:34 pm #17064
I completely agree with you – so important for us to participate in studies and contribute to research as much as we can. I truly feel it in my heart that we’re not too far off of some kind of breakthrough pertaining to this disease. Of course I want a cure, but even for now, something to assure we get a longer life after diagnosis would be welcomed and I do think amazing researchers around the world are on the brink of this…
From a fellow IPF patient, thank you for participating in the 2017 clinic trial! The results yielded will undoubtedly help others, so we all appreciate your contribution. I reached out to a few studies from that list over the weekend and hope to participate as well. I’d imagine I’ll hear from someone early this week 🙂
Talk to you soon,
February 25, 2019 at 8:18 am #17071
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