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Thalassemia Patients and Friends and thalpal © A. Battaglia 2019





55440 Posts in 5935 Topics by 6269 Members
Latest Member: Sophie1245

This is Thalassemia Patients and Friends,
dedicated to its founder,
Lisa Cammilleri.
(1970-2004)
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Author Topic: Recruiting patient for Thalgen Finally! Good News about Gene Therapy Trials  (Read 93149 times)
Canadian_Family
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« Reply #105 on: November 12, 2013, 09:29:53 PM »

The trial update as of November 7, 2013 is provided in the link below.

http://clinicaltrials.gov/ct2/show/study/NCT01639690

Hope to see some primary results in July 2014 as stated in the link, please see below:

Estimated Enrollment : 10
Study Start Date: July 2012
Estimated Study Completion Date: July 2014



 Estimated Primary Completion Date:

July 2014 (Final data collection date for primary outcome measure)
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Sharmin
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Little A


« Reply #106 on: November 12, 2013, 10:07:32 PM »

Canadian Family,

Thank you for sharing.  Praying for good news for our children. 

Greetings from Western Canada
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Sharmin
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« Reply #107 on: November 13, 2013, 04:39:00 PM »

Greetings back from Eastern Canada. However, I still hope Toronto Maple Leafs win over Calgary Flames on April 1, 2014.   



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Little A


« Reply #108 on: November 14, 2013, 04:25:01 PM »

ha ha Canadian Family -we'll have to see about that 

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Sharmin
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Little A


« Reply #109 on: January 17, 2014, 03:09:54 AM »

Has anyone heard anything new regarding the trials?  Hoping and praying that the first few patients are transfusion free - or at least close to being transfusion free....
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Sharmin
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« Reply #110 on: January 21, 2014, 02:56:02 AM »

Hello, I have not seen or heard of any new updates thus far. As I type this message, I hope that the trials are progressing with positive results, not just for the brave patients, but everyone who is affected by this disease. My son is now 18 months and my heart hurts for him everyday. May GOD continue to bless and guide the dedicated team during these trials.

Regards.
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« Reply #111 on: January 21, 2014, 02:21:37 PM »

Hi Sharmin,

Memorial Sloan-Kettering Cancer Center is ofcourse tight lipped in this matter. Lets hope for the best results. I expect some news by June or July 2014.

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Sharmin
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Little A


« Reply #112 on: January 21, 2014, 09:53:06 PM »

Canadian Family,

Yes, let's all keep praying for a safe and complete cure.  There is a conference in June in Chicago - perhaps there will be news released at that time.  My best wishes to all of you and your children.
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Sharmin
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« Reply #113 on: January 22, 2014, 05:49:48 PM »

Thanks Sharmin.

Best wishes to you and your family.

Just wondering if Andy has inside scoop in this matter 
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Little A


« Reply #114 on: February 04, 2014, 05:02:07 AM »

It is a good idea to contact Cooley's anemia for more information about the trials and to discuss enrolling in the trial.

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Sharmin
Pratik
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« Reply #115 on: February 16, 2014, 07:23:41 AM »

Wow, I really hope we would finally see a cure that works. Eagerly awaiting for June, roughly 4 months from now. I heartily hope all the patients who underwent would come out thal-free. It would be the most wonderful plight to see that happen.

Praying everyday for them, and as well as for all of us who waited years to listen to a positive outcome.

Best,

-P.
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Every child is special.
Sharmin
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Little A


« Reply #116 on: February 20, 2014, 05:30:58 PM »

I am currently looking into enrolling Lil A into the trials.  He is only 15 years 5 months right now - but I am guessing by the time the work up is done and everything is set up - he will be close to the age requirement for the trials.  I am also hoping to hear good news about the trials over the next few months.  I hope that a cure is close and that it is a complete cure.

Asking for prayers as we pursue this…

Sharmin
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« Reply #117 on: February 20, 2014, 06:00:33 PM »

Way to go.... hope we get to hear some really good news come this June...eagerly waiting for the results.

All the very best wishes for Lil A, will surely pray for Lil A!!!
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Sharmin
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Little A


« Reply #118 on: February 21, 2014, 07:39:07 PM »

Thank you catchR 
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Sharmin
Andy Battaglia
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Will thal rule you or will you rule thal?


« Reply #119 on: February 23, 2014, 06:46:13 PM »

Pat G's son also wants to go for this but has stated he will wait until after 10 patients have been treated. I think little A has this same luxury of waiting. By the time any decision has to be made, we will have a good idea of how well this works.
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Andy

All we are saying is give thals a chance.
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