Would you consider being in a clinical trial? Are you aware that without trials there is no hope of getting any treatment for NASH?

[nash2]

Why should any of us volunteer to do an educational video or be an advocate about liver disease? Simple really. Most of us won't get a transplant and so unless treatments are developed cirrhosis will shorten our lives. I do this because I decided not to die that way. The problem is that not enough people are diagnosed early and too few participate in trials. Without clinical trials there is no hope of getting treatments. This is just one thing we are trying to do make it possible to not die of cirrhosis. Your stories can matter.

drive.google.com/file/d/1kV...

[Bd22]

I would participate in clinical trials.

[mauschen]

I asked about trials and was told that there were none for NAFLD/NASH ... this was a university teaching hospital

[nash2 Partner in reply to mauschen]

Chance are he meant none at that hospital. I was at Baylor yesterday and they are currently running 49 liver disease trials and there are 3 in phase 3 I think

[mauschen in reply to nash2]

Thank you

Someone contacted me via Health unlocked about providing information from a patient perspective. I agreed to do this but I haven’t heard anymore-

[nash2 Partner in reply to mauschen]

If you would like to be considered for a patient video interview to talk about what the journey is like, part of an education project, go here and you can give some background for the TV producers to consider.

fattyliverfoundation.org/vi...

[mauschen in reply to nash2]

Thanks but I am happy to stay behind the scenes

[KitaAnn]

I am currently in a clinical trial, so I guess my answer is yes. I don't know if I'm taking the drug or a placebo, but it does make me feel like I'm taking some kind of action. I do worry about possible side effects, but then cirrhosis has some pretty scary side effects, too!

[nash2 Partner in reply to KitaAnn]

Thank you KitaAnn. Side effects are possible, of course, but they watch very closely for those and the safety trials are pretty good. On the plus side, most patients can only dream of having their doctor so interested in their condition. It is the only way we will bet treatment so you are a guiding light for the community.

[KitaAnn in reply to nash2]

Thank you. From what I'm reading there is a lot of very promising research going on right now, and I'm hopeful there will be a breakthrough (or even better, more than one) very soon.

[Paula_likes_pink]

i would participate in clinical trials

[Cats2018]

Yes, I am currently in a clinical trial. I was fortunate enough to be referred for my FibroScan where I was diagnosed with NASH, at a clinic that is participating in clinical trials. The doctor there told me about a new clinical trial & I decided that since there are no medications for treatment of NASH I would take my chances that I might possibly get the experimental drug rather than placebo. I do not know if I’m on the drug or a placebo, but at the very least I am being monitored at the clinic with monthly check ups & blood tests, scans & periodic imaging. The 1st thing required when I signed consent forms was to get a MRIs & a liver biopsy which confirmed NASH stage 3. I’m pleased to have been given the opportunity to participate in a clinical trial.

[nash2 Partner in reply to Cats2018]

Thanks Cats

It is only through trials that we will get treatments. One of the best things I found was that you do get a lot of testing. That was valuable to me just to really know where I stood.

Wayne

[Cats2018 in reply to nash2]

I agree Wayne. I look forward to the results of my monthly blood tests. I believe I’m going to be scheduled for another MRE of the liver in September. My initial diagnosis, MRE & biopsy were in May. I don’t know how much change I can expect 4 months time, but I’m hopeful

[AllHis in reply to Cats2018]

Thank you. I needed a positive "push" in the right direction. Inquired today. And in my own backyard!

[Cats2018 in reply to AllHis]

Good luck! I felt better once I made a decision to participate in the clinical trial. Please update us & let us know how you are doing!

[AllHis in reply to Cats2018]

Sorry to bother you. What am I doing wrong?

I went through antidote and have a contact and a NCT#... I'm confused...Do I need a referral from my doctor? And do I need a fibroscan first? Don't know how to do that one!?

(sleep study tomorrow night! I'm hoping it will tell me/us SOMETHING! Vertigo came back. I'm thinking BP Rx...)

[nash2 Partner in reply to AllHis]

If you find a study that you feel is appropriate for you and that is in your area you click in the "Choose this site" link and have the system email contact details to you. The studies are different in their requirements so when you contact the study coordinator they will explain the next steps. Hope that helps.

[AllHis in reply to nash2]

Thanks.

[Cats2018 in reply to AllHis]

Hi, I don’t know if I can answer your questions as I suspect I’m older than you are and on Medicare, so I don’t need referrals. However, I’m not using insurance for my care at this time because I’m in a clinical trial. With the clinical trial, the sponsor of the trial covers the expense of the testing I’m receiving so my insurance is not billed.

In my case the fibroscan was the 1st test I had to confirm liver disease. Good luck and I hope you get the care you need. Read the reply from our Administrator nash2 as he has good information and good advice!

[AllHis]

I'm so ready. Any in Cincinnati?

And how can it be any worse??!!! No one is taking me seriously, and keep throwing anxiety and blood pressure pills at me! Enough already! GI/ liver doc is baffled and wants me to go to the Cleaveland clinic.

Enough with guessing! I need an appointment yesterday. Lol

[nash2 Partner in reply to AllHis]

The liver docs at Cleaveland Clinic are very good. If you can get in there with one of their hepatologists my advice is to jump at the chance.

[nash2 Partner in reply to AllHis]

You can explore possible clinical trials through this link on our website

fattyliverfoundation.org/cl...

[AllHis]

Do you know if the study is only for those with a diagnosis?

And your help & opinion please.

My ENT has offered to do an office esophagoscopy. Is this going to show anything? My upper endoscopy was good last month.

I met with a doctor today who agreed a sleep study would be helpful.

(Gotta try anything at this point, although I do feel like it's the long way around...)

And then theres's my primary care...She can't wait for me to meet with the psychiatrist, because my chest pain is nothing more than "sensations."

And I'd be curious of the % of NASH or NAFL persons here who have had their gall bladders removed. And anyone else with no stones, but disease?

[nash2 Partner in reply to AllHis]

There are a lot clinical trials going on and they are testing very specific things. The research centers are also scattered. You can go to our trial finder and research the kind of trial that might be appropriate for you and where it is being run. Then talk to your doctor about a referral and getting tested. They do a lot of testing to see if you fit the kind of problem they are researching. Here is a link to get you started.

fattyliverfoundation.org/cl...

[Midnight2021]

I would be willing to particpate in the NASH clinical trial, if it will help others not have to go through what I do and members of my family . I would like to help find a cure!

[nash2 Partner]

Hi Midnight

That particular clinical trial finished recruiting but here is a link to a tool that you can use to search for trials in your area that may be appropriate for you.

fattyliverfoundation.org/cl...

A bit different need is to help educate the researchers on what patients need and Pfizer is currently looking to connect with a few patients to learn more about what the journey is like for patients. If something like that is of interest send an email to An Richards, a good friend of the foundation who is doing the research for Pfizer

[e-mail]

Wayne

[nash2 Partner]

Hi Midnight

That particular clinical trial finished recruiting but here is a link to a tool that you can use to search for trials in your area that may be appropriate for you.

fattyliverfoundation.org/cl...

A bit different need is to help educate the researchers on what patients need and Pfizer is currently looking to connect with a few patients to learn more about what the journey is like for patients. If something like that is of interest send an email to An Richards, a good friend of the foundation who is doing the research for Pfizer

[e-mail]

Wayne