Viewing 16 reply threads
  • Author
    Posts
    • #16615
      Amanda
      Keymaster

      If you are involved in clinical trials or research how did you get involved? Did you doctor provide you with the information or did you research and seek out opportunities? Where did you find that information and what steps did you take in order to participate?

    • #16619
      DanD
      Participant

      I’ve begged my VA doctor to get me into one of the many clinical trials for ALS treatment but he failed me. I’ve contacted several clinical trials myself but have been refused treatment for dumb reasons like my diagnosis was more than 2 years ago, my breathing is too weak or that I am just too old. I have tried to invoke the Right-To-Try Law and access treatment from drug companies like BrainStorm for NurOwn but they denied my request. All the new cure money seems to be pouring into Mouse Clinical Trials. Mice! The Rats are getting the better treatment and all the $$$$’s from our donations while I lay here getting weaker and weaker.

      ~Dreams Flame Out~

      https://1drv.ms/v/s!Aqo6HvkbNNDanGWJyM6M-0JmBzOn

       

    • #16780
      Carolyn Barry
      Participant

      Dan, I’m sorry to hear you haven’t had any luck yet in getting onto a clinical trial.  That must be so very frustrating for you.  I read your reply to Amanda’s post and that was the reason I asked my neurologist, at my first appointment after being diagnosed.  I was very fortunate in that she is heading a trial at Jefferson Hospital, which originates out of Mass General.  She said I might be eligible, due to being newly diagnosed, and hopefully I find out whether I am or not, at my first clinic appointment next Friday.  I really hope that somehow you are able to locate one that can take you on as a participant.  Has your doctor done some research on this for you?  I would hope so.

      Carolyn

    • #16786
      Bill
      Participant

      I’ve been in two drug trials and two longitudinal and genetic studies. The drug trials were from my Dr at university ALS clinic. I asked about trials and they set me up. The longitudinal and genetic studies I found by researching clinical trials.gov and emailing the study center (another university within 3 hours of me). They responded and enrolled me. I still get notifications of trials from my contacts I made at those two centers. I also have google search notifications set up that email of anything new in the news of ALS meds or trials. I still occasionally check clinical trials.gov. I always ask my Drs at clinic.
      Unfortunately, my symptoms duration lock me out of anything new. I still willingly contribute to any surveys or such from ALSTDI or from ALS association.

    • #16791
      Chuck Kroeger
      Participant

      By vital lung capacity of less than 60% has kept me out of any clinical trials that I wanted to get into.. im certainly interested  in participating if I could find would that would accept me

    • #16824
      Michael L.
      Participant

      Hi Chuck,

      Have you looked into the Healy Platform out of Boston.  I am in a group and one of the participants was recently accepted into a trial with barely meeting 50% lung capacity.  They are calling it the Healy Platform and are trialing multiple treatments at the same time.

      I have participated in a trial with Hospital for Special Surgery it was an 18 month trial and I have completed that and went into the open label.  The drug is called Arimoclomal and the company sponsor is Orphazyme.  I have been on the open label since September.  No changes from the trial so I am assuming I was getting the drug all along and not the placebo but will find out in the spring when they publish their findings.

      Cheers Michael

    • #16829
      Ann Thomson
      Participant

      How do you get involved in trials? We live so far from them. I want my husband on a trial but I don’t seem to get to the right people.

      Ann

    • #16830
      Dagmar Munn
      Keymaster

      Hello Ann – – Use this link to view the status of all existing clinical trials. The page has a helpful “how to” read the chart and each trial has specifics about enrollment and who to contact.

      I AM ALS Clinical Research Dashboard:

      Explore ALS Trials – ALS Signal: Clinical Research Dashboard

    • #16832
      Astrid
      Participant

      I was asked bij tricals, they  contactend me by email if i was willing to participeer in this trail, i just have had a long day of tests and i wil get the results this week.(foregive me my English i Am Dutch) i feel iT is importent to help if we can, we need to find a cure for us all  as soon as possible time is not our friend  anymore. So i will do this and hoop that we all one day will benefit from it, somewhere there must be a cure for us all . In the near future iT just have to don.t you think.

       

       

    • #16838
      Curtis Mumpower
      Participant

      My ALS Dr at the University of Iowa Hospitals & Clinics in Iowa City Ia suggested that I would be a good candidate for the Healy Trials as my respitory & swallowing are still very good.  Had to go thru a qualifying process(blood work, respitory testing, urinalysis & strength testing). They also sent me a full overview of info on the trials with breakdowns on each drug and it’s risks and known side effects. There was also information included on doing additional blood work for DNA work up etc & also for spinal fluid collection(both of these are optional). All test results were sent to the research facility @ Massachusetts General Hospital in Boston. I was then randomized to a drug regimine(Zilucoplan). Next I had to go and receive a meningitis vaccination as one of the risks with Zilucoplan is that it can cause meningitis. I had to wait 14 days after the vaccination to begin the trial.   I went Nov  5th to begin the drug trial. This was approximately a 6 hour process as I opted to do the extra blood work & lumbar puncture for spinal fluid. This intital process included very detailed testing of muscle strength, respitory, urinalysis, a questionnaire regarding my mental state in the prior 2 wks as well as watching a video on administering the Zilucoplan shot daily and a practice session for myself & my wife on giving the shot. They also had me download an app on my phone to do voice recordings 2X a week which are sent directly to the research team. It is a 24 wk trial but you can opt out at any time. However, if you opt out of the drug you are randomized to, you have to wait until the end of the 24 wks to start a different drug. Also, they will do another lumbar puncture at week 16 for more spinal fluid to compare it to the first sample to see how the neurons are reacting or not reacting the drug.  It’s a double blind study so neither you nor you Dr knows if your getting the drug or placebo. So far I’ve had no side effects from whatever may be in the syringe. Just a little burning sensation when I inject the syrum. Sorry for the long comment. Wanted to give a first hand account of my experience. Hope it helps.

    • #16839
      Carolyn Barry
      Participant

      Curtis, I really appreciate all you posted about participating in the Healey Trial.  I wasn’t sure what to expect and my doctor had told me I was a good candidate for this trial,  when I asked her about a clinical trial I could take part in.  All you described about the process of being eligible was so helpful and I have to admit, quite a bit more than I had expected.  But saying that, it doesn’t change my mind at all, as to hoping to be accepted into the trial, after undergoing all of the tests.  The clinical research coordinator contacted me, being that my first clinic appointment is this Friday, and she will meet with me to explain more.  How long does the process take, for determining eligibility?  Your firsthand account was incredibly helpful to me ~ thank you so much!

      Carolyn

    • #16841
      Curtis Mumpower
      Participant

      Hi Carolyn! As I recall, it was about 2 weeks before I found out I was approved. A big reason I was recommended for the trial as I said was that my respitory and swallowing are still very good and I am less than 36 months from diagnosis. The other 2 drugs, which names I can’t recall at the moment, are taken orally. One being a pill, the other a liquid. They will be continually adding drugs to the trial so if you don’t qualify for one now, there may be one in the future. Not sure why I was picked for the injection type since my swallowing and breathing are good. I think they knew my wife would enjoy sticking me in the stomach every morning! (Haha, just kidding). Hope this is helpful.

    • #16840
      Curtis Mumpower
      Participant

      As a follow up, I’m also working with another research group,  ALS TDI (Therapy Developement Institute) in Cambridge Mass. doing voice & motion tracking thru their Precision Medicine Program(PMP). They are a doing a great amount of drug research and have recently brought a drug(AT-1501) they developed into the trial phase.(Phase 2). You may be able to participate in a drug trial thru them. ALS TDI.com

       

    • #16844
      Carolyn Barry
      Participant

      This is all such a great help Curtis, I really appreciate your details! Since I was just diagnosed in October, I am clueless on what to expect, and now I’m feeling a bit more prepared for Friday’s clinic. I too, don’t have swallowing or breathing problems yet,  but I did have one  choking episode. I’ve been okay since, so we’ll see what they say! One question ~ Is the injection done using an auto injector or is it a syringe that you’d see a nurse use? Thanks!

    • #16856
      GtrJim
      Participant

      My wife was diagnosed with ALS three years ago.  She had been going to Barrow Neurological Clinic in Phoenix but switched to Hospice home care about a year ago.  When at Barrow, she participated in a clinical trial for Riluzole, taking 1-2 trial pills a day, dissolved in her mouth.  She takes all other medications and formula via feeding tube.  She continues to take the trial pill daily.  Her ALS progression is very slow and we think that the Riluzole is helping.

    • #16861
      Carolyn Barry
      Participant

      Curtis, it is interesting that you mentioned the ALS TDI, and their Precision Medicine Program.  I was just given their information by my niece, who had found out about it.  I’m guessing you’re happy with your participation in it, by what you said.  It did sound worth checking into, and I had thought I’d ask my doctor what her knowledge of it is, when I go to clinic this Friday.  Thanks for mentioning it!

      Carolyn

    • #17286
      Jonathan L Maddock
      Participant

      Curtis,

      Have there been any noticeable changes for you since you started the zilucoplan?

      I also was randomized to zilucoplan, but started on December 18th out of Mass General Hospital Healey Center. It’s only been a short time for me, so I didn’t expect to feel any changes. I hope it at least slows it down. I’d like to go on the extension program after the trial, but I have nothing to base that on. Just a feeling.

      I hope you do well.

       

      Jon

       

       

Viewing 16 reply threads
  • You must be logged in to reply to this topic.

©2021 KLEO Template a premium and multipurpose theme from Seventh Queen

CONTACT US

We're not around right now. But you can send us an email and we'll get back to you, asap.

Sending

Log in with your credentials

or    

Forgot your details?

Create Account