Research Priorities for Thalassemia

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Offline Andy Battaglia

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Research Priorities for Thalassemia
« on: April 02, 2006, 02:48:37 AM »
What should be the priorities for research about thalassemia and its treatments?

Each member may vote for up to three items in this poll, and you can also change your vote if you change your mind.

If you have issues not included in the poll, please add them as a reply.




Thanks go to Sally for the idea for this poll.
« Last Edit: April 02, 2006, 06:48:36 AM by Andy »
Andy

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Offline §ãJ¡Ð ساجد

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Re: Research Priorities for Thalassemia
« Reply #1 on: April 02, 2006, 04:50:16 AM »
Hi,
    I would have selected BMT instead of this other option, but I have heard that the stem cells taken from the Umbellical Cord (a.k.a Cord Blood) is less prone to rejection than the ones taken from the Bone Marrow. So I would prefer more research to be in Cord Blood department as this process is painless for the Donor than BMT.

Sajid
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Offline §ãJ¡Ð ساجد

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Re: Research Priorities for Thalassemia
« Reply #2 on: April 11, 2006, 12:38:08 PM »
Well, I can see that cord blood is now in the poll too. I will re cast my vote so that the statistics make more sense and remove my vote from "others"
اَسّلامُ علیکم Peace be Upon you
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Re: Research Priorities for Thalassemia
« Reply #3 on: April 25, 2006, 06:38:08 AM »
I think future of thalassemia research should focus more on to develop iron chelation, as gene therapy and BMT are not that easy things to do. Iron chelation from inside red blood cells may be the future treatment of thalassemia and that may even decline need of regular blood transfusions. Pathology of thalassemia is inbalance of globin chains inside red blood cells, but medical science have not fully explained the iron mediated cell damage due to iron iside cells. I think if we can successfully reach to solve this problem may be the treatment of thalassemia without transfusion.

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Offline Poirot

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Re: Research Priorities for Thalassemia
« Reply #4 on: April 27, 2006, 06:32:11 PM »
Pathology of thalassemia is inbalance of globin chains inside red blood cells, but medical science have not fully explained the iron mediated cell damage due to iron iside cells. I think if we can successfully reach to solve this problem may be the treatment of thalassemia without transfusion.

Hi,

Could you explain this in a little bit more detail?

I thought, by definition, Beta Thal Majors, either do not produce RBCs, or enough of them to maintain their HB levels. And, RBCs have a natural life, to boot. So, how does "intra-cell" chelation work in maintaining HB or doing away with transfusions? And, how you retain the oxygen carrying capacities of the RBCs if you are going to do away with the iron?

Thanks

Poirot


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Offline Andy Battaglia

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Re: Research Priorities for Thalassemia
« Reply #5 on: July 09, 2006, 07:34:46 AM »
I would like to remind all members to vote in this poll. Many doctors and researchers visit our site. Let them know what you think are the top priorities in thalassemia research.
Andy

All we are saying is give thals a chance.

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Offline alnahrahmea

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Re: Research Priorities for Thalassemia
« Reply #6 on: March 17, 2007, 04:44:54 AM »
I am not very sure, but since hemoglobin is blood related, I believe that stem cell research could be a very promising study that will help all Thalassemia patients.
Lei  :heartpink

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Offline kabir_love

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Re: Research Priorities for Thalassemia
« Reply #7 on: April 01, 2008, 01:52:28 PM »
all i can say is so many options......... then we dont have to wait longer

my personal exp.. if the cure will come it would be in gene therepy..  as per my knowledge which 1%..   lol


mikcy

Re: Research Priorities for Thalassemia
« Reply #8 on: June 18, 2008, 11:33:26 PM »
I agree that there are many options,  gene therapy on the surface would appear to offer the best possibilities for all types of thals, ( I don't meand to trivialize this) but in my heart I believe that in the end the answer is going to be so simple we will all wonder why we suffered so much for so long.  Something like a shot of anti-malaria vaccine or some other vaccine created for some other purpose.  Its now being established and more widely accepted that the cure for autism is actually PREVENTION, simply not giving vaccines to very young children.  Sometimes the answer is so simiple its unbelievable.

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Offline cherieann

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Re: Research Priorities for Thalassemia
« Reply #9 on: June 23, 2008, 09:43:17 AM »
That was hard to vote.
All are a priority to us in one form or another.
Quality of life would sum up what we want... don't you think?
Thalassaemia is a lifestyle not a burden.

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Offline nice friend

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Re: Research Priorities for Thalassemia
« Reply #10 on: June 24, 2008, 12:43:31 AM »
Hi :
i havevoted 4 three options:

basicaly i want to say that take  hold on the problem from routes  ... u cant achieve targets by handling to the logs ....iron overload and osteoprosis like problem r the logs ( in my view ) route cause is thalassemia so try to prevent thalassemia and then  focus on research and development sector for people who r suffering.....
 
1 ) Before Marriage Testing is the best choice,  bcoze we cant provide medical facilitys 4 all thal all around the world.....

2nd reason prevention is better than cure .

3 reason is how much thals u can manage to treatment .. fine and easy way is to think abt future ...

2 ) Stem cell and cord blood transplantation for Thalassemia

it is for the thals who r living in this era .... so then they could b able to live a healthy  life without transfusion ..... if u can live without transfusion u will never face the problem like iron overload ..

3) Gene therapy for Thalassaemia major

same reasons to vote for this ....  ... research will ring hope for those  people who r suffering to thalassemia .......
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well as today many of thals r living all around the world u cant look after them .....



« Last Edit: April 16, 2009, 11:47:30 AM by nice friend »
Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.

===========
Umair

Re: Research Priorities for Thalassemia
« Reply #11 on: April 16, 2009, 09:35:30 AM »
Vote for

Gene therapy for Thalassemia major

Management of health issues in aging thals

Stem cell and cord blood transplantation for Thalassemia


Good luck for the research for the coming cure for all thalassemia patients

Re: Research Priorities for Thalassemia
« Reply #12 on: October 29, 2009, 01:00:01 PM »
vote for
Increasing Hemoglobin levels in thalassemics
Management of iron overload in Thalassaemia major
Management of osteoporosis in Thalassaemia major

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Offline Keep Smiling

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Re: Research Priorities for Thalassemia
« Reply #13 on: November 19, 2009, 01:02:31 PM »
i think gene therapy is the best option for all thalassemics............

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Offline nice friend

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Re: Research Priorities for Thalassemia
« Reply #14 on: November 20, 2009, 01:54:33 PM »
@ Keepsmiling ,
Friend , though genetherapy and other treatments has a potential to cure but in the end  these treatments are risky and painfull , so , my 1st choice is Prevention and awareness  campaigns ..  i would like to say here that " try to controle n stop thalassemia to spread bcoze its most important in every aspect , all these treatments come's after that " .... anyways , u r right as welll ..

C ya bro .. dont mind wat i said ,,  if it is something offending u , then plz ignore it ..

Best Regards
Take Care
Umair
Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.

===========
Umair

 

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