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Crohn's Disease Forum » Ask the Experts » Interview with Dr. Hal Gunn, the Founding CEO of Qu Biologics and Developer of "Site Specific Immunomodulation" (SSI)


 
03-01-2013, 10:49 PM   #31
snowwhite
 
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Kiny, doesn't this hypothesis run in tandem with the recent Japanese study on MAP that you recently posted? Dr Gunn thinks that the innate immune system is failing at clearing out the dead bacteria. If I remember correctly that Japanese MAP study linked Crohn's to dead MAP floating around in the bloodstream.
03-11-2013, 11:04 AM   #32
spinnychick
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Got an email this weekend, they have selected 60 people to participate and I made the invite list!!! Not sure what I will do as I don't much want to travel out to BC three times, but am researching and considering it. Don't know if my doctor would approve either.
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03-11-2013, 11:07 AM   #33
David
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I understand your predicament Spinny. But if there was one clinical trial I would want to be a part of and do everything I could do participate, it would be this one.
03-11-2013, 11:10 AM   #34
spinnychick
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I don't know much about it to be honest and need to do some research over the next couple days. I'm also nervous to ask my doctor for his approval, I almost feel like I am "second guessing" his treatment plans, although he doesn't have me in remission yet since being diagnosed last May. I trust your judgment and since you seem keen on this I will def give it serious thought. I know 30/60 people will be on placebo, so only half will actually reap the possible benefits of this new wonder drug.
03-11-2013, 03:00 PM   #35
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Actually spinnychick from what I read everyone gets the medication. What happens is for the first 8 weeks half of the people get placebo and half get medication and then after that the ones on placebo will be switched to the treatment. At least I think, someone correct me if I'm wrong!

On another note, does anyone know if it's too late to participate in this? I live about half an hour outside of Vancouver when not at university, the only thing is I don't think my parents would be too keen on an experimental treatment!
03-11-2013, 03:21 PM   #36
killcolitis
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I was in contact with Dr Gunn this past summer as we were considering this for our daughter (aged 6) with UC. I spoke to him and the CMO and I have to say they were incredibly generous with their time, honest and kind. They spoke to us for probably more than an hour on several occasions. At the time there was a pretrial in the Caribbean and our daughter was too unstable for us to feel comfortable traveling there with her. Now they are only trialing the treatment on adults but hope to have a pediatric trial in the future. I'm in Ontario and would be happy to travel to Vancouver with this (I would have traveled to the Caribbean if it had been me and not my daughter without too much of a second thought). I'd love to hear how it goes for those who are participating. I wish you the best of luck, this seems like such a promising treatment to me.
03-11-2013, 03:41 PM   #37
David
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kiik, I would definitely contact them. And once your parents see all the data surrounding the existing patients, I think the might end up as excited as I am about the potential of this treatment.
03-11-2013, 04:24 PM   #38
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Thank you David
03-12-2013, 09:53 AM   #39
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Thanks David, I went to fill out the form and got error messages so I emailed them. They are emailing the programmer so hopefully I will be able to participate! I am only in Vancouver from April - August, although if it was really worth it I could fly back for the checkups. Is there any particular reason you are so excited about this treatment? I think my parents are mainly worried about the number of people they've tested it on.
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03-12-2013, 11:22 AM   #40
David
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A combination of reasons. Three of the big ones are how well it has worked thus far, the lack of side effects, and the fact that, in theory, there should be very minimal side effects for the vast majority of people.

They've actually given the same general type of treatment to tons of people with cancer so it has been widely used. They simply changed it up a little for people with IBD. My point being, it has a long history of use in human subjects.
03-13-2013, 09:00 PM   #41
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Well I did the pre-screening questionnaire and am currently on the list! They said that they will ask for medical records to determine eligibility once everything is ready to go. Hopefully I am eligible/will be in Vancouver at the time!
04-10-2013, 06:59 PM   #42
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Thanks for this interview. I had not heard about this new treatment and it sounds very exciting. Especially for those who have failed many treatments already or are allergic to them.
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Allerg Imuran Sept 08
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EENOct 31 - Nov 28th. Too hard!
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05-08-2013, 02:03 PM   #43
Hal Gunn
 
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Hi everyone,

I wanted to update you with 2 new video's that have just been released to Qu Biologics YouTube page to give you a better idea about the Qu Biologics Crohn's Disease Trial process.

1) Study Treatment Injection Training for Qu Biologics' Crohn's Disease Trial

2) Stool Sample Collection Training for Qu Biologics' Crohn's Disease Trial

Happy to answer any questions you might have about Qu Crohn's Trial.

Kind regards,
Hal
05-08-2013, 02:13 PM   #44
sid
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welcome to the forum Dr Gunn. really glad to see you here...your new study has given us a lot of hope..all the best with the SSI trials.
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Diet as per ayurveda.
Vitamin D and B12 shots.
Currently experimenting with Probiotics, starting 2016.
And a large joint mad family, thus stress cant touch me.
05-08-2013, 02:42 PM   #45
spinnychick
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My GI hasn't yet approved me doing this but they called and I am supposed to let them know asap.
05-08-2013, 05:14 PM   #46
Igor_Passau
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Welcom! I posted a lot of information about your innovation in IBD. But in other part of forum.
By the way I was in the list to participate in clinical study but I could not formalized issuance for this study ;(((( but I hope the further stages of studies will be more open for not citizent of Canada. I could participate and other
05-08-2013, 05:58 PM   #47
Hal Gunn
 
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Thank you everyone for your comments and updates. This is much appreciated.

If you do not live in Canada, I encourage you to fill out the questionnaire on the website. You will be put on a wait-list and we will be able to contact you if there is an opening or opportunity.
05-09-2013, 03:42 AM   #48
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I registered on the web but I failed pre-screening Questionnaire – «I am not a Canadian resident with valid health insurance coverage that meets one your criteria». I was in the list of first 60 patents for the clinical study but this did not work… Sorry, but I posted mails on this forum, with the purpose to find any solution. http://www.crohnsforum.com/showthrea...t=36119&page=2

Last e-mail from 8th of September 2012:

«Dear Igor,

Our clinical team has reviewed the insurance policy provided in your last email and it was very helpful for us - it looks promising, but to be 100% certain, we have decided that it would be preferable to have the individual insurance companies acknowledge our conditions, instead of us reviewing different insurance policies from different companies. Qu Biologics has decided to supply a letter of explanation and an attestation to all potential clinical trial participants so that they can obtain written confirmation from their insurance provider.

Could you please provide this letter (attached) to your insurance provider and ask them to review it to make sure your insurance policy fits with the terms & conditions stated in the letter. After they have reviewed it, please kindly inform us if the letter is acceptable or if they have any problems with the terms. Their feedback is very important to us because it will help us to determine whether or not we can accept non-Canadian residents like yourself into our clinical trial.

Kind regards,
Winnie Lim

Clinical Trials Assistant»
Summary:

1. I have my local issuance and I also have international police.
2. I could obtain Canadian issuance for non-resident of Canada.
3. I try to find international company to cover my study but the work only corporate clients.
None of above could cover clinical trial! If you will arrange study for non – resident of Canada please include me in list of patients and give advice regarding the issuance.


Regards,
Igor
05-09-2013, 08:06 AM   #49
spinnychick
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I live in Ontario and have been selected and am trying to find out if travel and accomodation expenses are covered.
05-09-2013, 08:38 AM   #50
Igor_Passau
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I live in Ontario and have been selected and am trying to find out if travel and accomodation expenses are covered.
Qu Biologics will pay for any testing that is required as part of the clinical trial (lab tests etc.), and we will provide the drug for free. All other expenses (travel, accomodation, food etc.) will be the responsibility of the patient.
05-09-2013, 09:01 AM   #51
spinnychick
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Yikes, that's a pricey trial for us then. Three flights there, plus 3 nights hotel stay twice and a week another time. will have to ponder this, we're talking thousands of dollars.
05-09-2013, 09:54 AM   #52
Igor_Passau
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Yikes, that's a pricey trial for us then. Three flights there, plus 3 nights hotel stay twice and a week another time. will have to ponder this, we're talking thousands of dollars.
For me it is the same one flight about 1000 USD! But this is nothing if this SSI will give remission ))
05-09-2013, 09:56 AM   #53
spinnychick
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I know we can't put a price on our health but being able to afford something is a completely different story. Here in Ontario, we have help to cover humira and remicade, provincial grants, sponsors, etc.
05-09-2013, 12:12 PM   #54
Igor_Passau
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I need only advice about issuance! All cost I will cover ... I also start thinking to live in Canada my company Deloitte offer me such possibility
05-16-2013, 11:06 AM   #55
Hal Gunn
 
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Great questions everyone. Thank you for sharing these.

We have reserved a discount for participants at a hotel nearby in Vancouver - Ramada. Please see attached. This information will be posted on Qu Crohn's Trial website shortly so that other's will be able to see this.

Best regards,
Hal
Attached Files
File Type: pdf Ramada_Qu Corporate Rate.pdf (313.3 KB, 39 views)
05-23-2013, 06:45 PM   #56
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Hi Everyone,

I am the Social Media Coordinate at Qu Biologics and am happy to answer any general questions you might have about the trial.

I would also like to hear your thoughts about the trial.

Looking forward to hearing from you!

Kind regards,
Ashley
05-29-2013, 01:50 PM   #57
David
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What kind of legitimate research organization holds clinical trials in the Caribbean?
Qu Biologics is a very small startup company, they're anything but Big Pharma and are operating on an extremely limited budget. Taking a medication from research through three clinical trials costs millions and millions of dollars. The caribbean offered them a means of offering their medication on a compassionate use basis for a low cost and to allow them to showcase that there does appear to be efficacy AND few side effects. I personally applaud them for trying to bootstrap their medication through the clinical trial process instead of selling out to a huge company.

I'm sorry the form didn't work for you but software bugs happen. While it was no doubt frustrating, the mature thing to do would have been to contact them privately, not attack them here. I'm going to give you 24 hours to cool down and rethink the conduct of your post. Feel free to respond to this thread if you want to apologize to our guests. They deserve better.
05-29-2013, 03:10 PM   #58
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Hi SkinnyNinny,

Please contact us here: http://www.qucrohnstrial.com/contacts/request-to-speak/ . We would like to call you and answer all of your questions.

Thank you for letting us know that the form didn't work for you. In the contact form, could you provide the date and time you tried to complete the form and what happened when you tried to submit the form (e.g. did you receive an error message)? This will help us pin-point the issue so that we can ensure this doesn't happen to others.

Thank you,
Best regards,

Ashley
05-30-2013, 06:03 PM   #59
tylerthorndale
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Hi everyone, my name is Tyler Wilson and I created a video testimonial of my experience using QBECO SSI therapy for Crohn's Disease. It has changed my life and I wanted to share my story with you:


2 other participants in the trial also shared their experiences. Here are the links to their videos:

Natalia



Colleen



I hope this helps,
Tyler
05-31-2013, 01:50 AM   #60
Twiggy930
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Thanks for posting those testimonials Tyler. This give me so much hope for the future.
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Son (age 13) diagnosed with Crohn's Feb. 2012.
Currently on Imuran and Sulfasalazine.

Also taking: TuZen probiotic and following a low FODMAP diet (not very strictly).

Past Treatments: Prednisone, Flagyl, Cipro, Pentasa, exclusive EN via NG tube (6 weeks), Prevacid, Iberogast (20 drops twice a day) and high doses of vitamin B2.
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Crohn's Disease Forum » Ask the Experts » Interview with Dr. Hal Gunn, the Founding CEO of Qu Biologics and Developer of "Site Specific Immunomodulation" (SSI)
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