How do you get into clinical trials?

What are the steps to take to get someone with PSP into a clinical trial? I have seen several clinical trials since a news release came out from CurePSP a couple days ago. I wrote to the person in charge at PEP, CurePSP, and she sent me some links. I went to the links but I don't know where to begin. Does the patient have to live near where the study is being conducted? My guess is that the patient's neurologist would have to recommend participating in certain trials. Has anyone out there been helped by participating in a clinical trial? (By the way, I'm feeling better today after a very hard four days mourning my sister's pain and feeling sorry for myself. Maybe I need an increase in dosage of antidepressant medication. I have questions about this, too, but I'll ask them later.) Thanks for any words you may have on clinical trials participation.

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  • Hi there Pagesofwords!!!!!!!! I am not sure if my one and only experience (thus far) will help you at all.....My neurologist referred me onto a research project that was being undertaken by a local university - basically the plan was to try and identify characteristics for determining a PSP patient versus a CBD or Parkinsons patient. Ana because I have very specific characteristics for a PSP diagnosis, he thought I would be an ideal candidate - and it turns out I was. Having said that what did I get out of this process???? Well I was seen and ultimately assessed by a Neuropsychologist who was incredibly good at providing feedback (when I asked her!!). Most of the assessment tools used I thoroughly enjoyed and also when I commented to Gail about not feeling any emotion , nor am I able to express emotion with tears etc, she said she was more than happy to look into that for me and run some more tests on me - these should be starting in about another month!!!! I have to say though, that while I am just so keen to be involved with trials for PSP, they are not very easy to find, particularly here in Australia. I can imagine though depending on what the trial does involve, that living within driving distance would be the advantage.

    So, I hope this helps a wee bit - tell me though, is it your sister who has PSP??? and which country does she / you live in !!!! XXXXX

    Cheers

    Bindi

  • Thank you, Bindi. We live in Iowa City, Iowa (Midwestern U.S.), just ten blocks apart from each other. She has PSP. Not meaning to be too personal but I wonder--about not feeling emotion--do you remember how emotions feel but you just cannot experience them? What do you experience instead? My sis doesn't seem to realize some kinds of emotion--well, it seems she just experiences some type of anxiety for any kind of emotion. Is that what it is like? She still will laugh or smile a bit at times.

  • Hi there, pagesofwords. Re the emotions or lack of- my laughter has changed quite dramatically over the last 12 or so months,as has my smile. And certainly, if my husband and I are with friends and someone wants to take a photo NOW, I will continue with whatever it was I was doing.... and I won't Br ready for the photo until I am ready!!!!!!!!! One of the saddest things for me is when one of my brother died this New Year's Eve just gone- he lived in Harere with his wife and a son lived close by. Adrian and I plus a brother from NZ went over to Harereto support the family. AT NO TIME, during all of this upheaval to our lives, did I cry,,,,,,,,, and it is just so frustrating!!!!!!!!!! And it is just so unlike me not to show any emotion. Anyway that is my next research project!!!!! Lovely to chat with you. Cheers Bindi

  • Our neurologist here in the US would have signed my guy up for the CoQ10 trial, except that I had already been giving my guy CoQ10 to counteract what I thought was damage from his taking statins, making him ineligible. I'm not sure I could have managed it, given the amount of travel required. Anyway, I think your sister's neurologist would be the place to start.

  • Thanks! We've started the ball rolling!

  • Good luck! Please let us know how it rolls!

  • We have tried two ways. First, I agree with EC. Our neurologist knows of clinical trials at her university. My husband wasn't qualified for the two she was conducting. I have also gone to ClinicalTrials.gov and looked at what trials are recruiting and, if I was interested, called the contact listed to find out more.

  • Thanks, Christine! We are getting to work on this.

  • Contact Trish Caruana with CurePSP who is over their Patient Engagement Program in the US. Her number is 443-794-4340. Or email her at caruana@pepclinicaltrials.com. You can find more info at CurePSP.org under the category "I Need Support". Tell her that Dan Heins sent you

    Best wishes,

    Ketchupman (aka Dan Heins)

  • Thanks, Dan. Actually I sent her an email yesterday and she replied right away. :)

  • Awesome!

  • I also signed up on the Michael j fox trial finder site and they send an email when a clinical trial is found according to your search criteria. Or you can search for trials on their site.

  • L-serine can be bought online and is movingly into phase 2 trials on als patients. Here's the break down.

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    Here's the patent.

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    Here are the results of phase 1.

    tandfonline.com/doi/full/10...

    A related study using l-serine.

    m.jpost.com/Business-and-In...

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