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Let’s talk about clinical trials
During my 8+ year journey since diagnosis, I have been a strong supporter of clinical trials. I have participated in both observational trials and interventional trials of investigational new drugs (IND). I have read a number of discussion threads here written by others participating in clinical trials.
What do you want to know about clinical trials? What holds you back from participating in an IND trial?
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18 Replies
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Hi Samuel,
I, like you are a really strong supporter of clinical trials.
I have found trials here in the UK rather limited and hence I went all the way to Australia to take part in a trial there.
I will clarify what I mean by limited and be prepared for anyone to correct me. There are trials in the UK and I have been invited to join them, some I didnt even qualify for.
I am completely selfish when it comes to any drug trial. I dont want to take part in cough studies or trials of anti-fibrotics. The reason is simple in my mind, we already have two licenced anti-fibrotics.
If there were a drug or therapy that stopped my progression or reversed the disease I would not have a cough would I?
The trial nof which I took part was in Brisbane for a drug that stopped progression. Obviously it was a blind trial so we had no idea if it was the placebo or the drug I was taking. From the results of my LFT every two weeks it looked promising, my results were steady without further decline.
I will say that the team at LRQ in Brisbane were fantastic and I could not have wished for a better experience.
I would encourage anyone to partake in the trials, what have you got to lose? Everything to gain for yourself and other sufferers around the world to find a cure for this horrible disease.
We need data and the data is us!
Kind regard
Jeff UK
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Hi Jeff. What is name of the drug that was the trial you were in?
It sounded promising and I wish you well!
I live in the states and would like to search out a trial for whatever drug helped you..
Have a great day out there!
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This post really spoke to me! I was recently contacted to do a blind trial for an inhaled form of Esbrit. I thought sure, I’ll do that, then the details, two weeks in a row, one day each week at a hospital downtown, 7 hours a day and that’s an hour away for me Then every six weeks, for a year, another day downtown for 4 hours. This is a trial that will last 1 year. Morning and night application of the inhaled substance and ediary for each of those applications. Payment for this trial for the full year would have been around $900. Are you kidding me, the gas alone (they would pay for parking) would eat up most of that. I’m not looking to make a fortune on this, I just wanted some restitution. When I said no, she actually shamed me over the phone and by email. BTW, I do not take Esbrit, I”m still on mycophenolate but I may be on Esbrit or the other one so I was interested in the trial for that reason. And it’s not like I don’t help my fellow man, next Monday I will be at another hospital for a white cell donation by apheresis, this will take about 4 hours, I do this for RA research of which I’m unlucky enough to have.
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I did trial for a drrug that stops the progression. I was very happy to participate and after the year, I got on the guaranteed real drug. I have been on the real drug for about 3 months now and everything is good. I would urge anyone that has the chance to get into a trial. As another participate said, you have nothing to lose. But in my mind, the possibility of a longer life with progression halted.
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Rod-Branham, was the clinical trial Fibroneer, or would you rather not say?
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Treprostinil
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I have tried to qualify for clinical trials but either I didn’t meet their FVC(2 different trials) criteria or was bounced because of a stage 0 melanoma which was surgically removed with no further treatment 4 years ago. I’m already taking Ofev and the trials allowed Ofev along with the investigating drug.
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Chuck,
I will share with you that the first interventional drug trial I was considered for did not approve me. The reason was that my IPF was not advanced enough. It was the only trial I was ever turned down for. Make sure your care team knows you are still willing to participate.
Sam…
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Hi Sam,
I participated in a clinical trial of saracatnib in 2020 not long after my initial diagnosis of IPF. My diagnosis occurred in conjunction with a 5 week hospitalization for IPF and lung clots. I completed my participation in the trial, but covid caused delays so that the trial was not completed until 6/30/24.
My question: how long does it take to get trial results? Is a wait nearing 1 year “par for the course”? Do funding cuts and Washington chaos mean all bets are off?
John R
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Hi John,
First, thank you for participating in a trial. As for how long does it take; it depends. I recommend you contact the research coordinator for the center where you participated in the trial. If that is not successful I will post below a link to the government site here in the U.S. where you can research the status of a clinical trial.
Sam…
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I alternate appointments with 2 pumonologists. I’ll see my Yale doc (where I did the trial) in June with hopes of an update.
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Do you recall the documents you signed to participate in the clinical trial? One of those documents should have been the Institutional Review Board plan. There is normally a portion of the information you receive that describes the endpoints for the trial and how information will be released. The NIH has a good explanation of the IRB. https://pmc.ncbi.nlm.nih.gov/articles/PMC4631034/
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I am participating in a trial for a new version of pirfenidone with the purpose of reducing side effects. The site is over an hour away but I get paid for milage. It has been a positive experience. The good news is I have had no side effects from the new med.
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Where does anyone find trials?
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You can visit https://clinicaltrials.gov/ to look for clinical trials here in the U.S.
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Hi to all.
If anyone have information regarding :
Saracatinib trial phase 2b
Bristol myers: trial phase 3 on going.
INSILICO: Pase 2? Or is a phase 3 ? For some reason is cannot find new information.
Our Doctor, is recommending the Perfenidone inhaler trial.
Nerandomilast: Any success story would be greatly appreciated.
Alex
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It looks like you are in Canada. If that is correct you might try to use the Health Canada Clinical Trials Database. https://www.canada.ca/en/health-canada/services/drugs-health-products/drug-products/health-canada-clinical-trials-database.html
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I do take research study trials not clinical trials that I would be taking a different medication. I take so many prescriptions now and am very sensitive to even the slightest changes in the meds. So for that reason, I don’t feel I’m a good candidate for trials such as these.
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