• Welcome, Guest. Please login or register.
    September 16, 2019, 08:48:48 PM

  • Login with username, password and session length

Sajid's dove

Tell everyone they can now find this site by typing this into their browser:

thalpal.com

Click to visit us on Facebook


If you have any problems registering or signing in, please send an email to: andythalpal@yahoo.com
Please do not send questions about thalassemia to this address.


Administrators
Andy
Danielle

Thalassemia Patients and Friends and thalpal Ā© A. Battaglia 2019





55105 Posts in 5866 Topics by 6148 Members
Latest Member: Disead

We love you, Lisa.
May you Rest in Peace,
knowing that your legacy lives on,
right here, and through all of us.
You're forever in our hearts.
« previous next »
Pages: « 1 2 Go Down Print
Author Topic: Research Priorities for Thalassemia  (Read 38022 times)
Keep Smiling
Junior Member
***
Offline Offline

Location: Faisalabad, Manchester of Pakistan.

Gender: Male
Posts: 153



« Reply #15 on: November 21, 2009, 04:00:49 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
Logged
mohamed
Active Member
**
Offline Offline

Posts: 85



« Reply #16 on: April 06, 2010, 07:13:45 AM »

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, 07:19:26 AM by mohamed » Logged
7assan
I wish you a speedy recovery
Junior Member
***
Offline Offline

Location: Kingdom of Bahrain

Gender: Male
Posts: 113



« Reply #17 on: June 11, 2010, 01:03:15 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.
Logged
Razia Khan
New Member
*
Offline Offline

Posts: 2


« Reply #18 on: August 19, 2010, 12:56:14 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
Logged
ankita
Active Member
**
Offline Offline

Posts: 32


« Reply #19 on: September 05, 2010, 01:56:28 PM »

cord blood treatment
Logged
love and prayers
Junior Member
***
Offline Offline

Posts: 154


« Reply #20 on: February 05, 2011, 02:21:25 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
Logged
Parin
Junior Member
***
Offline Offline

Location: USA

Gender: Male
Posts: 136


« Reply #21 on: March 02, 2011, 09:49:01 AM »

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?
Logged
DrRajpal
Active Member
**
Offline Offline

Posts: 50


« Reply #22 on: October 02, 2015, 03:19:21 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.
Logged
DrRajpal
Active Member
**
Offline Offline

Posts: 50


« Reply #23 on: October 03, 2015, 03:15:47 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.   

   
Logged
Pages: « 1 2 Go Up Print 
« previous next »
Jump to:  

Powered by MySQL Powered by PHP Powered by SMF 1.1.21 | SMF © 2015, Simple Machines Valid XHTML 1.0! Valid CSS!