Research Priorities for Thalassemia

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Offline Keep Smiling

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Re: Research Priorities for Thalassemia
« Reply #15 on: November 21, 2009, 10:00:49 AM »
there is nothing offending in it, the points u mentioned can be taken as  preventive steps...............
but once thalassemia happens to hit u then treatment especially genetharapy is the best option to root out the basic cause of thalassemia..
Hope u doing well....................

Abbas

Re: Research Priorities for Thalassemia
« Reply #16 on: April 06, 2010, 12:13:45 PM »
i think hbf inducers are safer, if there is a potent hbf inducer; thalassemia could be a drug based disease as any other disease (other than a transfusion dependent disease which is the major cause of the most serious co-morbidities in thalassemia). antioxidants role in preventing apoptosis and red cell death may help in parallel to HBF induction. but this needs alarge scale of researches to get the best formulation with the best intense dose to achieve both aims.
« Last Edit: April 06, 2010, 12:19:26 PM by mohamed »

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Offline 7assan

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Re: Research Priorities for Thalassemia
« Reply #17 on: June 11, 2010, 06:03:15 PM »
I think gene therapy is the only solution for patients with thalassemia. Because after gene therapy the patient does not need to transplants or medications province the proportion of iron in the blood or other medications. Because after gene therapy patient recover from thalassemia. :rolleyes

Re: Research Priorities for Thalassemia
« Reply #18 on: August 19, 2010, 05:56:14 AM »
I think cord blood storage is the best option. Dont they say that prevention is better than cure. Especially now that its available in Pakistan, every parent should get it done for every one of their child.

Regards

Re: Research Priorities for Thalassemia
« Reply #19 on: September 05, 2010, 06:56:28 PM »
cord blood treatment

Re: Research Priorities for Thalassemia
« Reply #20 on: February 05, 2011, 08:21:25 AM »
"Patient recruitment and enrollment in clinical trials is a major challenge. Among people who suffer from severe chronic illness, only 6 percent participate in clinical trials. Almost 50 percent of trial delays result from patient enrollment problems and 86 percent of all U.S. clinical studies fail to recruit the required number of subjects on time. Industry wide there is a 20-30 percent patient dropout rate in Phase II/III studies."

http://www.nhlbi.nih.gov/meetings/workshops/thal_workshop.htm

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Offline Parin

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Re: Research Priorities for Thalassemia
« Reply #21 on: March 02, 2011, 03:49:01 PM »
Dear All,
Any research or cure coming in near future i mean in 1-2 year.....I read lot many things but no one talked about the time.....any one have any thoughts?

Re: Research Priorities for Thalassemia
« Reply #22 on: October 02, 2015, 08:19:21 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.
ohhh
sir we are 5033 members here,
but participated in it only 127.

sir plz make any system that such polls should come on priority on every visit.
i could see it today , i feel nervous , i am here since long time but participating in it so late.

sir what i know till now,
5033 no. for any research will be one of rare for data collection.
we all should participate in it.

dear friends Dr Andy is a person who is here only for selfless service, we all should respond on his every action.

Re: Research Priorities for Thalassemia
« Reply #23 on: October 03, 2015, 08:15:47 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.
best quotation i have heard till now,
mem can i use it in my campaigns ,

Qality of life is big concern for thals ,
as all of us know - it would be best if gene therapy gets success , but what till then?
we can work for-
reducing iron overload,
reducing amount of blood getting transfuse,
reducing Endocrine related disturbances,
reducing osteoporosis,
retardation of ageing,
reducing secondary infections,
protecting liver , spleen, heart , kidney , lungs, ears, vision, joints etc.
increasing time between two consecutive blood transfusions.

we all can gets these by simply Yoga , Ayurveda , and Naturopathy.   

   

 

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